It’s weird how the majority of my life used to be consumed by darkness. Not run of the mill sadness, but dark, abysmal, nebulous, I don’t want to live anymore-darkness. Hours or days or weeks of unending despair, hopelessness, like every morning was a new look into my very own dark tunnel with no light. None. Not even a flicker of sunlight.. Anger, hatred of my life, jealousy of all the other people my age around me doing what I should have been doing for the past 5 years. Anger at my situation, living with my parents for so long and fighting about the disease that ravaged my body and mind, the treatment of my disease, how to pay for my treatment. Loss, victimization, HOPELESSNESS, and HELPLESSNESS.
It’s weird because, now, the majority of my life is consumed by happiness. Even when I was in the emergency room for 8 hours a couple weeks ago (to rule out a picc line infection), I was HAPPY. I was exhausted and feverish and delirious but grateful for experiencing this umpteenth ER visit because it was the FIRST time I had experienced it from a place of happiness, peace, calmness, and above all, FAITH. That inner knowing that everything would be ok, no matter what. I was ok and didn’t need someone to tell me I was OK. I knew it. I don’t just OK mean OK at the ER last night, I meant in general with this long battle or journey with Lyme over the past 5 years.
What’s weird is that sadness, or emotional discomfort, is actually a strange feeling! Yet it was part of my existence for so long. This is SUCH wonderful news! The last 2 months have been by far the most progress I have made over the last 2 ½ years of treatment. So with that,
HAPPY 1st BIRTHDAY to my PICC LINE! (What's a picc line? Go here).
Exactly 1 year ago today, I was pretty nervous to go to the hospital and have a peripherally inserted central catheter (picc line) placed in my chest and come out through my left arm. My 4-year old niece, Harper, calls it my ‘lollipop’ because that’s what she thought it was when she first saw it. God I love her! Who thinks a lollipop is taped on the inside of your left arm?? Harper does...well she sees candy everywhere she looks. Oh to be inside the eyes of a child again...I digress.
So, my picc line is basically is a tube that lives inside a vein in my body and goes from the outside of my left arm through my chest to the tip of my heart, where it can distribute intravenous medication quickly for the most potency. I infuse it myself daily via IV pole or fanny pack (oh yes, I haven't lost my sense of fashion with this disease). My picc line stays in til it can no longer, and then I may need to get a new one. But I'm going to make this one last for the entire treatment. I just know it!
Most people don't have a picc line that lasts a year. Or longer. But I wouldn't consider myself most people. I am extremely meticulous about keeping it clean and taking care of it! Having this device in your body takes a lot of getting used to, not being able to get that arm wet, or carry more than 5 lbs. on it, keeping it sterile, etc.
But it has ALL BEEN WORTH IT. Intravenous treatment has been so life-changing. The treatment of this disease has been gruelingly painful – I have enough past posts that go into some detail of the chemotherapy-like torture it induced for years. But now, I can finally reap the rewards of all that treatment. I am still doing daily IV infusions, but I love my picc line and all the progress it has brought me. From November 2010 onwards, I just feel like I've been on an upward spiral. Sure, there are some rough days, but that comes with the territory of infusing toxic drugs into your body to kill off an infection that doesn't belong there!
I’ve done so many amazing things in the last 2 months, that may seem meaningless to many readers, but are massive triumphs for me as most of my friends know. I remember starting treatment in late 2008 and my friend Ally literally holding my whole body up like an old lady, walking arm in arm with me to take me across a short stretch of Golden Gate park to get to the bathroom. It was like climbing Mt. Everest. I considered getting a walker or buying a wheelchair at that time so my friends could take me outside. I never did, and am glad I didn’t. Just a few weeks ago, I walked about 35 minutes around the Botanical Gardens (pics from my walk in this post) in Golden Gate Park (pictures attached to this post) by myself and had the most amazing experience.
I walked in the Gardens not only for 35 minutes,but AFTER driving myself to a few appointments, and doing a few other errands that day. Rewind a couple years back, if I made it to Walgreens for a 20 minute outing once a week, I was lucky! The day I walked through the Botanical Gardens last month was magical for many reasons:
• I have never walked through them despite living in San Francisco for 7 years
• The Gardens are beautiful, it was sunny and 70 degrees in the middle of February
• I was just happy!
I wish I wrote right after I walked through the Gardens because the experience is one I will NEVER forget. They say you get a new lease on life after a debilitating illness or experience. It’s true. I walked through that garden like Alice in my own Wonderland, bright eyed and dreamy. I had a smile across my face that hurt my cheek muscles because it wouldn’t go away the entire walk. I sat at the Japanese Garden and did some meditation, and then I walked throughout the Gardens like an alien who just landed on Earth for the first time. The trees, the cherry blossoms, the flowers, the gorgeous gardens right in my own backyard (I realize how lucky I am to live in San Francisco almost every day), everything was SO INCREDIBLY beautiful. (I saw candy everywhere, just like Harper. This illness has been such a gift in seeing the world through new eyes). The people who passed by me must have thought I was smoking something SERIOUS. I was high on life!
Feeling life in my body again, feeling life-force-energy coursing through my veins...after being locked to my bed and complete debilitation for years was AMAZING. Ok, so the force wasn’t strong enough to get me on my mountain bike or working yet, but I could see those realities on the horizon. I didn’t know HOW I was going to get from walking the Botanical Gardens and running a few errands to one day mountain biking, rock climbing, surfing, volunteering, working full time as a human rights lawyer, and socializing again, but I just KNEW it was going to happen.
Wayne Dyer always says you don’t need to know HOW to get from point A to point B; you just need to believe it is going to happen.
So many Lyme patients (and I am sure others with illnesses) wonder constantly HOW they are going to get better. HOW am I going to be able to walk 35 minutes when I can barely make it up my parents’ 20 foot driveway, I remember last summer? But look at me now! The process of improvement was NOT linear. Ups, downs, one day walking and going on a date and the next in my parents’ house having a seizure and having my mom feed me while I cried hysterically. No rhyme or reason and our brains want to know HOW. I say – don’t worry about the how. JUST BELIEVE. What the mind believes, the body achieves. If you can imagine it, it can happen.
Anyways, I digress, as usual. But, TO WHAT DO I ATTRIBUTE ALL THIS PROGRESS? (Most of my friends have asked me this)
• My picc line – my IV treatments are working, the longer that I treat, the better I get
• Moving back to San Francisco and living in a wonderful, good energy house with 2 amazing roommates; living on my own and slowly reintegrating into parts of my old life and being surrounded by my friends, community, peers (instead of living in a suburban house attached to an IV pole with only my parents and a TV to talk to)
Of COURSE, the combination of naturopathic, homeopathic, and holistic treatments (chi kung and energy healing, acupuncture, meditation, visualization) that I do are ESSENTIAL. My meditation and gratitude practice, as well as learning about happiness science have been INDISPENSABLE. See Dr. Aymee Coget's Happiness Science website for more info.
Boom! Secret to my success…for everyone it is different. I had to let go of SO much anger, sadness, frustration, and fear to get to this point. Without that, I would still be very ill. I have done a lot of work on myself, I’d venture to say more than many people do in a lifetime. But I had the luxury (I can call it that now) of almost 5 years to be with myself and have no outlet and no place to look other than inward…it’s pretty damn hard but it was worth it.
With that, I’ll end with a poem that was just sent to me:
Suffering is a treasure, for it conceals mercies;
The almond becomes fresh when you peel off the rind.
O my brother, staying in a cold dark place
And bearing patiently the grief, weakness, and pain
Is the Source of Life and the cup of Abandon!
The heights are found only in the depths of abasement;
Spring is hidden in autumn, and autumn pregnant with spring.
Flee neither; be the friend of Grief, accept desolation,
Hunt for the life that springs from the death of yourself.
~Rumi
For those of you who know me, I am a spiritual person, and I ADORE Rumi. One of the most insightful poets in history. This poem described everything I went through and continue to go through, but thankfully, I am at the part where I am ‘springing from the death’ of myself. I didn’t have to hunt for this life as the poem says; it came to me. In a way, I am lucky that I was stripped barren of everything for I had no choice but to shed everything and see life anew. I feel like I have grown the wings. Literally the caterpillar is transforming into my butterfly.
The beautiful view from our window....how can you NOT get healthy looking at that everyday?
INSURANCE UPDATE: As most of you know, Blue Shield stopped covering my monthly IV bills (roughly $3,000/month). They covered NONE of it for 8 months and then covered about 45 days after CBS/KPIX did a piece on me and my battle with Blue shield. Then they stopped and I'm back to medical bills of $5000+ per month (IV bills plus doctors, etc...) I have appealed numerous times to the state and insurance boards with no luck. Years of fights with insurance companies and over $150,000 in out of pocket medical costs later, my friends have decided to throw me a fundraiser since I've been denied disability and my dear old parents have not much left to support my Intravenous drug habit (aka my life-changing intravenous Lyme meds). My dear (pregnant and working) friend, Yael, is helping me spearhead the fundraiser - SAVE the DATE - Thursday, May 12th for Monapalooza at 111 Minna! More details to come. 111 Minna has donated the space along with DJ Sam Isaac, who will be spinning that night!
Yael and her husband, Eli, took the picture above and photoshopped it. We'll be using a similar shot (but not this one) for the invite for Monapalooza. The ticket website is up! http://www.brownpapertickets.com/event/166958
