Deep Inside My Soul on a Dark Summer Day

Flashback to June 2, 2009


I never thought I would watch the Bachelorette again. I loathe reality TV. I need the escape, anything to take me out of my world for just an hour. I never thought I’d wake up on a Tuesday at 3 pm and watch Full House because I was so lonely and could do nothing else including even make my own meal. I never thought after rock climbing, surfing, snowboarding, and mountain biking my whole life, that I would only be able to walk 2 blocks down the street to the bridge at the age of 31. I never thought I’d be spending my free time contesting an appeal whereby doctors have deemed be able to work full time and I am spending my precious energy that should be used on healing and resting in parsing through thousands of medical records to contest this and ‘prove’ my disability so I can get some income so I don’t have to claim bankruptcy from the $80K I have spent in medical bills.


I never thought I would forget how to spell words or get lost inside the grocery store or just put scissors in the freezer b/c I think that’s what you do. I never thought I would take 6 pills every night just to sleep when I used to sleep like a baby through alarm clocks my whole life, and definitely never thought I’d take 79 pills daily just to keep my system functioning and fight a disease that nobody knows about or believe exists, and even fewer know how to treat properly. I never thought I’d spend most of the year with my parents at their home, having them – in their late 60’s – cook for me, do my laundry, do my dishes, sometimes make my bed or cut a cucumber when I am in too much pain or too incredibly exhausted to stand, while I am 31.

I thought it would be the other way around. I thought I’d be married, engaged, have a meaningful career I love, travel, safari and backpack through Africa, climb Kilimanjaro and come home and tell family friends at holiday parties about my adventures, set up legal justice projects abroad, see parts of the world I haven’t seen, and help people in those places, be active in all the sports I love, working diligently on the Spark Board, trying to make a difference in many ways with my pro bono cases, learning, volunteering, participating, rock climbing in Lake Tahoe, skiing in Canada, mountain biking and hiking on the weekends, camping and drinking too many Pacificos, having wine & dinner and friends, hiking on the beach and getting lost, CONNECTING with the world and other humans. Instead I am with me, myself, and I all day EVERY day and, even more exhausting, my own thoughts. Try being with your thoughts and no physical outlet for 3 years – it will drive you to insanity.

I always thought I would have to make sure to give myself alone time with the incredibly busy Type A lifestyle I led, a civil rights lawyer, overachiever, general spaz, and now I have to make concerted effort to just see another human besides my parents or get out of the house more than once a week. I never thought I’d be going to Target on a Saturday for my daily outing, for my source of “fun” which is in quotation marks on purpose b/c clearly my idea and ability to handle fun has been altered. I never thought that walking ten minutes without fatigue would be immensely gratifying and a feat for me. I never thought I would pee orange. I never thought I would hallucinate and hear weird noises and voices but I do now (unless I was on drugs of course, and I am on drugs, but prescription ones not illicit ones).

I never thought I’d walk up and down my parents’ driveway in the hot summer a few times for exercise, and be too scared to leave the smooth black tar and step out into the bumpy gray street b/c I was in my nightgown. At 2 pm. Ashamed to walk onto the gray concrete street and see the construction workers stare at me like some kind of alien. I never thought I’d have 5 large binders full of medical records that I guarded with my life and organized more meticulously than any of my cases when I was a working attorney.

I never thought I would wear a plastic ring every day that my mom bought me as a silly trinket 6 years ago because I now thought it had healing power. But when you are down low, any source of faith will do. I never thought I would throw an avocado at the wall after the age of 10 from a temper tantrum, but I did last month. And I do, sometimes, when the Lyme rage is at its best (or worst, depending if you ask my parents who are there to witness it). I never thought I’d break plastic toys in the garage to get my anger out. I never thought I’d be in so much excruciating pain that I’d rather trade it for my vertigo & dizzy & crying spells.

I never thought I’d spend New Year’s Eve in my snowpants buried in snow in 5 degree weather in the backyard of my parents’ house at 3 in the morning crying hysterically until they found me outside (clearly, that was a low point and majorly induced by herxing from the treatment).

I never thought I would lose 25 lbs. after reaching my 20’s. I never thought I would drop from my healthy athletic size 6 down to a size 0 at 31. Every girls dream right? Ha! Be careful what you wish for. (And for the record, I never would wish to be a size 0). I never thought I would spend $6,000 a month on doctors and pills and supplements and acupuncture and energy healing. I’d much rather spend it on a trip to Bali.

I never thought I’d get this much free time to myself until I was retired. I never thought once-cherished noises like bird chirps and small children laughing would make me want to scream bloody murder because they sent throbbing pain through my ears. I never thought I’d hit refresh so many times in a day on my computer to see if anyone out there in cyberspace was reaching out to me.

I never thought a piece of machinery – a computer – would be my best friend, my closest ally in times of all insanity, depression, anxiety, anger, boredom, frustration, confusion, panic, in all times of happiness, reconnection with my old self that occasionally returns to me in pieces, those pieces all getting ready for the big Mona system reboot in a year or 2 or 3 whenever this hell is over if it ever is and it better damn well be. I never thought my computer would be my connection to the outside world and that I’d long for a cubicle in my old office just so I could feel like I was doing something and even had people within 20 feet of me to talk to during the day. Be careful what you wish for. I never wished for this much free time; I never wished for any of this.

The thing is I NEVER in a million years thought I’d be where I am today. Sometimes I feel like I’m in a bad bad dream. But I never wake up. I was always do it all perfectionist Mona. On the path to success and happiness...Don’t they always say oh life is not going to turn out like you plan? I always knew my life would follow a virtuous and perfect and successful plan, and it didn’t. Not only did it NOT follow this carefully crafted plan, it strayed so far in the opposite direction that it took all that I know and knew, put it in a blender, shredded it to pieces, liquefied it, and vomited it all around the kitchen walls. It turned my world upside down.

And today, I hate that plan, that master planner above that crafted this destiny for me. But on my good days when I am not so sick from treatment or the disease itself, I know with all the truth in my heart that this was my intended plan and that I needed my world to turn upside down b/c the happiness I thought I was living was not sustainable.

The turning over of my life has revealed a wonderful discovery of so much more underneath my material and physical identities that I did not know about. It revealed the coming to terms with the truth of who I am, and discovering a way of being that I cannot believe I did not know before. Spirituality, Buddhism, Eckhart Tolle, letting go of my attachments with identity, and learning this all at the tender young age of 32 (well it’s tenderly young compared to elderly Buddhist monks!). I'm no Buddhist monk, but this journey will turn me into a better person than I ever could have imagined. The Mona I wanted to be accomplishing all kinds of things and doing and making and producing and running around without stopping to breathe would not have been 1/10th the Mona that will now emerge from this transformation once my caterpillar gives birth to her butterfly. I’m still in the cocoon. But the time is coming soon.

And watch out, because when this caterpillar transforms into the butterfly, there will be GOO EVERYWHERE!