Saturday, May 15, 2010


I feel like I want to die right now. You know that horse tranquilizer that Will Ferrell accidentally takes to the jugular in the movie, Old School? I want one NOW and want to be knocked out from feeling any pain, nausea, neurological symptoms. Maybe a tranquilizer that lasts 7-12 months.

The world feels like it's not real - I feel like I'm on some kind of bad trip from these meds - everything is spinning and going up and down and I don't even feel present on this earth.(Disassociation is a very common and yucky Lyme symptom). My head hurts so badly and the nausea is KILLING me. I am on anti-nausea meds (Zofran, the kind they use for chemo) but still feel like I'm going to vomit on the floor.

Everytime I close my eyes, I see white flashing lights. I cannot even sleep b/c the lights haunt me (occipital lobe in the brain gets infected by the Lyme bugs). I HATE today. I don't get how 1 week ago EXACTLY, I felt so wonderful on the IV. I was able to walk 25 minutes, stop in a few stores for window shopping, do dishes, and was pain and nausea-free. AND I could think somewhat clearly and I had almost no neurological symptoms. No vertigo, dizziness, until that night. Wow.

I feel so confused, why the ups and downs? I know this is not a linear healing process, I know the herxing makes no sense, but can someone just tell my why I have to suffer so much the last 4 days and a week ago I felt on top of the world? Can someone just tell me why it's not linear and WHY this rollercoaster has to ensue for years and torture me?

Though my brain understands what I have learned about Lyme treatment (that it is a rollercoaster of ups and downs), my emotions and my spirit don't understand. They try, but they are weeping like a little child who cannot understand. Why keep teasing me with functional or even good days, weeks, months, and then take it all away and push me back into full disabled mode? WHY??????????! I wish someone could explain this all to much as I know there is no answer.

I cannot see out of my dark tunnel today. This is when it's essential I turn to friends and healers to keep me seeing the light at the end of this dark tunnel.

Wednesday, May 5, 2010

The Old Monas: a Picture Story

I thought I'd post some pics of the old Monas. Most of you knew her at some point in her life. Some of you may have never met her. She intends on coming back. In fact, she has told me she intends to be healthier and happier than she EVER was before this all happened. Getting to that place is and has been a long journey. But I will never give up trying to get there.

Picture story here:

When I look back at these pictures, I am amazed that I was ever able to do these things. Simple things - like cook a meal, or have the energy to cook a meal with my niece! I think it's been years since I've had even that small amount of energy. But then I see pictures of me dancing, hiking, snowboarding, having the cognitive ability to get through law school and pass the California Bar Exam! All these things I took for granted.

Nowadays, I am happy if I can make a meal and not be exhausted after. I am happy if I can read the front page of the New York Times and remember what I read the next day (or sometimes the next hour). Dancing, hiking, surfing, rock climbing, traveling, those all seem like memories from another lifetime and another body that I inhabited. Even getting on a plane is a challenge without an oxygen tank and usually requires a few days to a week to recover (the hypoxic environment is VERY hard on Lyme patients and causes major symptom flares).

How did I galavant across South America, Europe, India, Colorado, Hawaii, how did I do that? Even simple things like going to a concert. I could never do that now. My noise and light sensitivity is so bad that sometimes I have to wear sunglasses when I watch TV or leave my cherished Target visits (yes, that's what I do for fun) b/c the lights and noise are too much. I haven't even listened to music for the greater part of 2 years because it hurts my ears.

I feel like I've inhabited this strange body - that isn't mine, but that has become mine, this ungodly thin and frail woman who is nobody I know but who I have been for almost 3 years. And so I cannot remember what it FEELS like to have the energy to just leave the house like a normal person for an ENTIRE day, without bags of meds and supplements and bags and coolers of special diet foods and a time schedule because I always tire out easily and need to return home to my nest to nap, and earplugs. I want to just go, just go for a walk, drive to the store, to the gym, go for a hike, spend the whole day playing frisbee, go for a swim, to a concert, for some beers, and dance all night long. I just cannot imagine what that is like. It is so foreign and yet I took it for granted my entire life and now I am 32, and have less energy than my 90 year old grandmother (Aji) who is sitting on the couch with me.

All I can do now is employ the powers of my mind, meditate, believe, strive, and keep believing on days or weeks when I am crying and hysterically ill for what seems like FOREVER and cannot see through the darkness to the end of this long tunnel. In those times, I read the many quotes I have taped all over my walls, one of my favorites being:

"All the powers in the universe are already ours. It is we who have put our hands before our eyes and cry that it is dark We are what our thoughts have made us; so take care what you think. Words are secondary. Thoughts live; they travel far. When an idea exclusively occupies the is transformed into an actual ...physical or mental state. We reap what we sow. We are the makers of our own fate. None else has the blame, none has the praise. There is no help for you outside of yourself;you are the creator of the universe.

Like the silkworm, you have built a cocoon around yourself.
Burst your own cocoon and come out as the beautiful butterfly, as the free soul. Then you will see the truth.
In one word, this ideal is that you are divine. God sits in the
temple of every human body." - Swami Vivekananda

Monday, May 3, 2010

Are you better yet?

"Are you better yet?" my 3-year old niece, Harper, asked me today when we were on skype. I hadn't skyped with my precious nieces (who I ADORE) in weeks and had a horrible day today. Felt ill, had excruciating pain in my liver and stomach area, and then found out my labs reflected that my liver/gall bladder/pancreas weren't doing well and reacting badly to the meds. I had to stop treatment for a while, not sure how long, maybe a few weeks, hope not longer. I felt lost and trapped - couldn't be well without the drugs, couldn't be well with them. I've been in this predicament before where the drugs were necessary but my body couldn't handle them. The fine line in Lyme treatment, and I had exceptionally sensitive organs.

Anyways, when Harper, my precious outspoken adorable 3-year old niece asked me that question with a hopeful look in her eye, I couldn't bear it. I wanted to die inside. Even though I've explained to her many times that I have a 'disease' that I have to take a lot of 'medicine' for and not a 'cold,' how could this little girl be expected to understand how long, complex, and irrational the treatment cycle is for late-stage Lyme? Especially when most adults who are my age can barely understand it? And most doctors in America do not understand it? And I've been treating 19 months and am STILL not 100% better?

With most other diseases, you either know or don't know at this point. Late-stage Lyme is an incredibly horrific disease in so many ways, and very much so on the psyche because of how long treatment takes when the disease is not caught early. It pillages your body disguised as other 'ailments' for years until it wears you bone-thin until you are a puddle of nothingness. After that time, you search for answers across the country, and when you get your diagnosis - Lyme - you are ecstatic. Hooray! It's Lyme! I'll bee better in no time. THEN you experience with every fiber in your being the real truth about this disease - the paralyzing, physically and psychologically disabling chemotherapy that is called Lyme treatment. (My doctor calls it chemotherapy because he has seen how horrific it is on patients, and his own 5-year old daughter AND wife went through actual chemotherapy for cancer). Anyways, I digress.

Back to the story..

I wanted to cry at Harper's question but had to keep a happy face on. "Well," I responded, "I'm a little better, but I still have to take my medicine for a little while. Can you girls come be my special doctors when you come here to visit?" They (both my nieces, 6-year old Palmer and her) said, yes immediately. Of course they would be my 'special doctors.' They are coming to stay here at my parents in July for a month. I hoped distracting them with 'playing' doctor would make them forget that I was 'really' sick.

When I couldn't say I was immediately better, it brought to light the reality of my situation. The reality being that I am some days better, and some days horrible. That on some days (for which I feel gratitude of the highest kind), I can walk 20 minutes and even go out to a meal or a movie or even make it through Target without hitting the emergency help-Im-going-to-faint-page-my-mom-IMMEDIATELY button. That only days later, I can be stuck in bed all day for days or weeks, barely able to stand up, needing sunglasses to deal with even indoor lights, having a seizure, and in excruciating pain, nauseated and filling up my bed with pools of tears and grief.

Even almost 2 years after I was diagnosed, I still don't know when I can expect a full remission. And my doctors have some 'idea' but the time to heal from this extremely complex disease is just as much of a guessing game for them, because people respond SO differently to treatment and have varying degrees of illness and immune system response.

"Why are you acting like that?" Harper then asked.
"Like what?" I said.
"Like you're all better," she asked with her big brown doughy eyes that made me melt.
"Well, I am better I told you," I felt like I was lying but had to keep my smiling face on for them. Not only that; seeing them on my computer screen was the only thing that made me smile all day.

Then Harper asked "Who is your doctor?" After I told her his name, she said, "I am going to beat up that Dr. ___!! I am going to knock his head off!"

Palmer (my older niece) has caught on to this and said, "I'm going to take a phone and poke out your doctor's eyes. I hate him for keeping you so sick on this medicine!"

"No, my doctor is helping me get better, sweetpea," I said. This isn't the first time Harper and Palmer have expressed anger at my doctors for 'putting me through this.' Although I am thankful for my doctors, it makes me laugh and my heart smile to think my little angel nieces wants to beat someone up because they think they are responsible for me feeling so sick.

They don't know any better - they know something or someone is hurting their aunt - and they want to fix it. Who can blame them? If only I could explain to them (or most people) the complex web of events, perceptions about Lyme, ignorant doctors, and corruption in the medical and insurance industry that have all melded together to bring this about.

Palmer (my 6-year old niece), who is a bit more cognizant of my disease because of her age, asked me once, about 6 months into treatment, "You still HAVE that thing?" when I told her I was taking medicine for my Lyme. She, like so many others, thought it would just go away like a really bad cold. I laughed so hard when she asked me this. She began to catch on later, and I kept telling her all the things we would do together when I was better.

"When you're 7 years old, I am going to take you rock-climbing and snowboarding, ok?" I said at the park one day.
"But how can you take me to do those things if you're sick?" she asked.
I told her of course I would be ALL BETTER when she turned 7. Silly girl.

But will I? She just turned 6 last month and the scary answer to that question looms like a cloud over my spirit...haunting me more on days like today when I feel ill, lost, and unable to even tolerate my treatment.

Sunday, May 2, 2010

LYME and LOSING the Ability To Reason

Copied with permission from Connie Strasheim, fellow Lymie, from her blog (w/ permission) at:

Sunday, February 07, 2010
Lyme and Losing The Ability To Reason
Have you ever noticed how Lyme disease and especially, Herxheimer reactions can make the "real you" disappear? You listen to your thoughts and words during a Herx and wonder what little demon has suddenly taken your personality captive.

Perhaps you've been through this thing enough now to expect the red-horned thoughts. But isn't it funny how you still have trouble discerning rational thoughts from irrational ones after you brain gets slaughtered by neurotoxins?

Lyme messes with our ability to reason. Seriously.

Whenever I'm in the midst of doing harsh treatments (which I've recently taken up again), it seems that everyone around me turns a different shade of ugly, and I must remind myself that I really do love the beasts.

Which is hard to do after I've lost four nights of sleep, my body aches, and my liver is raging from all the toxins that have been poured into it (too many toxins in the liver produces anger, incidentally, so it's not just the brain causing the messy thoughts).

During these times, if I'm smart, I will tell myself, "C'mon...c' can do really don't hate the whole world, you just don't feel good..."

One of the reasons that relationships break up over Lyme is because people with Lyme lose their ability to reason, which in turn, distorts their perspective of their relationships and reality.

Because of such distortions, they make bad decisions. They say and do things they don't mean or which aren't beneficial for their wellbeing, and their outlook on life becomes bleak.

Of course, everyone sees the world and reality through tinted lenses, but in the person with Lyme disease, the shades can be exceptionally dark.

Having an awareness of how Lyme affects our ability to reason, and explaining this problem to loved ones can help mitigate problems as we navegate the healing process.

Personally, I have found that it's possible to live in truth when neurotoxins conspire to paint a warped picture of reality, when I get down on my knees and ask my god to show me that truth. When I am quiet and willing to listen, I get a picture of how things really are, and what I must do to stay my thoughts upon reality.

But then I have to walk in that truth, and continue to acknowledge the voice of God's Spirit within me, so that I don't go back down the dark road of irrationality.

Yes, it's difficult to stay in this reality when you feel absolutely horrible. It's a constant effort, and when you are tired the last thing you may want to do is meditate upon truth.

Besides, if you are someone who seeks comfort from God, as I do, you may find that even God turns ugly when your reasoning goes out the window, and you want nothing to do with Him.

I encourage you to push through it, because you will feel better for it. Trust me.

Sometimes unfortunately, our biochemistry also affects our perspective of God. I am writing a chapter about this in my new book on spiritual healing, because I believe that it's important to recognize the role of brain dysfunction in faith.

In any case, I believe that even those with the strongest of spirits struggle in their faith when faced with incredible physical and mental challenges.

Knowing this is beneficial for when we go through such struggles, because if we recognize the demonic toxins and their effect upon our minds for what they are, we can then more easily take hold of, challenge, and replace those thoughts with something better. Or at least not beat ourselves to a pulp for not loving our neighbors a little more, or for not feeling any warm fuzzies towards God in our suffering.

I used to curse God whenever the full moon or some horrible Herx would hit me. I would think He didn't love me and that He didn't care if I was ever made well. I have grown. Most often, I don't blame Him anymore, because I don't buy into the lousy thoughts that result from my troubled biochemistry. I have learned that those suggestions don't represent what the "real me" would think under better circumstances, and so I discard them.

If you find that prayer doesn't bring you back to a peaceful place of reality, why not find a good book or funny movie and retreat from the loved ones until you feel some signs of sanity returning?

I know, it's not possible for everyone. Some of you have children or a spouse to attend to, or people that you must work with all day long. I sympathize with you. We really need an escape from others when the monsters come to take over our brains, not only for our peace but theirs, too. We don't want to hurt or confuse them with our mixed-up words and actions, and sometimes, it's easier to just escape, instead of trying to be sane, logical people around them.

Finally, I encourage you not to beat yourself up for your thoughts. Your brain and body are being forced to function amidst serious biochemical deficiencies and an onslaught of bug sludge, which inevitably produce imperfect thoughts. Give yourself some grace and space to be crazy. It will one day all pass, and in that day, you will see yourself, God, and the world in a better, brighter light.

Saturday, May 1, 2010

Questions Everyone Asks (w/ my answers) and a Spiritual Rant

March 29, 2010

Question: What are the symptoms of Lyme?
Answer: What ISN'T a symptom? See "My Story" on the top left corner of my main page for all symptoms, here are a few of the basics:

• bone-crushing fatigue (as in sometimes you can barely make it to the bathroom or down the stairs)
• chest pain, inability to breathe or get oxygen to Lyme-infected heart and lungs
• dental & jaw pain to the point you cannot eat anything cold or hard
• vertigo and dizziness that make you feel like the world is going up, down, swirling around, and someone gave you a bad dose of some hallucinogenic drugs and the experience never ends
• weakness
• excruciating joint, and muscle pain EVERYWHERE (to the point you cannot turn a doorknob or type a word because your wrists hurt so badly and it feels like someone is knocking a 50 lb. hammer directly onto your neck and spine)
• electric neuropathic pain that feels like you are being electrocuted
• migraines, headaches
• nausea, stomach pain, organ pain
• auditory and visual hallucinations
• extreme noise and light intolerance (think no music, sunglasses even at night, inability to watch TV for long periods of time)
• Rashes
• memory loss, complete and utter loss of cognitive ability (as in I put scissors in the freezer and got lost when my dad dropped me off at Whole Foods once, IN the store)
• short-term memory loss, confusion, word-finding difficulties, major visual disturbances (blurred vision, even had a herx so bad where the entire house was 'cloudy' and covered in fog and all I could see out of my eyes was a thick fog vision for 10 hours straight - scared the crap out of me),
• numbness and tingling in toes and fingers, inability to feel parts of your body at times
• major depression, anxiety, psychological manifestations of all sorts, panic attacks, irrational rage, and the list goes on...

Question: REALLY?!?! You got that disabling disease and all that from a tick?
Answer: Um, yes, a tick. If the CDC and medical community would just fucking get on board already with the extreme seriousness of this disease, people would know that! Those little fuckers (ticks, I mean) can ruin your life, not just for months or a year, but YEARS. I know people who have treated and been sick over 20 years. I don't plan on being that person, but late-stage Lyme disease is brutal because it affects your physical, cognitive, and psychiatric faculties. And the treatment - well my doctor calls it chemotherapy - it lasts not months but years. Years of painful rollercoasters filled with ups, downs, ER visits, family strife, and financial ruin.

Because it is the widest growing infectious disease in the country, it has been speculated that some fleas and mosquitoes may now carry it too. Not to freak you out, just sayin'.

Question: What do you do all day? (I'm sorry but I HATE this question).
Answer: Seriously? Oh I sit around painting my toenails, eating bonbons, and ordering my butler Gerard to get me some gluten-free banana bread and Pelegrino. In actuality, I spend most days now in this order:

Taking some of my daily 80 meds and supplements and herbs
Infusing my intravenous treatments and being attached to my IV pole for 2-8 hours per day
Getting up to Infuse meds again
Watching some TV if I can handle the noise and light

Frequently spending too much time on my computer in hopes that I'll be reminded of something or someone connecting me to my old life or delivering me a laugh.

Staring out the window and crying and wondering how I got here and how the world is going on without me.

fighting insurance companies who have denied almost all of my treatment not to mention hundreds of other claims, organizing medical records, reviewing labs to make sure organs are in working order (You'd think doctors would do this, but often they miss things), contesting my long term disability benefits appeal with my former LTD insurance company through my employer, gathering documents for Social Security disability applications, filing medical records in my 8 medical records folders, ordering supplements, putting pills in my 6 pillminders (yes I have 6), taking detox baths, fighting the people who are supposed to be giving me disability payments with appeals and getting letters from doctors, affidavits from family members, friends, and colleagues to support my application, raising awareness from Lyme, trying to get a fundraiser going for my treatment, scheduling numerous appointments and holistic treatments, calling my doctor's office twenty times a week to get some copies of records or labs, doing weekly blood draws (50 this year alone), getting my home health nurse to change my dressing, asking and answering questions about Lyme from Lyme support group members.

Also, if you see my "My Diet, Supplements, and Routine" page at the top left of the blog, you will see that consuming that many pills and concoctions separated from meals and other meds and supplements literally takes up 3/4 of the day.

On good days, I go out for a meal with a friend, have lunch, do a short walk, run an errand, or enjoy sitting outside.

That is of course when I'm not don't feel like the ground is shaking, or I'm crying on the floor or too nauseated to sit up straight. Sometimes I spend hours staring out the window in a drug-induced haze trying to keep my balance b/c vertigo will knock me down when I walk and dizziness and migraines and crippling fatigue rock me so hard that I cannot move and just stare at a wall or out the window and wonder what real people do all day.

Honestly, once I was on an airplane waiting for a wheelchair, watching all the passers-by walk by me, carrying luggage, and it was SO foreign of a concept to be able to just get up and go and carry something that weighed over 10 lbs. I was amazed, as if I were watching aliens. How did these strange creatures move so FAST and with such EASE? Yet, I used to climb mountains on my bike for 4 hours every weekend or log 8 hour days on my snowboard, or run on 4 hours of sleep and still get to work and then chase my nieces afterwards.

Question: What do the doctors say? When are you going to be better? (Again, I know it's out of concern and love that people ask these questions, but this one eats a part of my soul every time it is asked).
Answer: Bottom line: nobody knows. 2, 3, 4, 10 years, who knows? When will I be 100% fully returned to the old Mona? Maybe 1 or 2 more years. That's with 2 years of treatment behind me. And years before that wandering from specialist to specialist seeking an answer to something (that we now know as late-stage Lyme) I KNEW plagued me but that most doctors dismissed (as they often do) as 'being all in my head.' I never believed one of them and kept going, from UCSF to Los Angeles specialists to the University of Michigan, and finally found someone who knew how to address the appalling and massive failures of mainstream medicine to treat people with chronic illnesses and especially late-stage Lyme. Ah but that's another post, that would be 500 pages.

So EVERY Lyme patient is different. You know how you learn in grade school that NO 2 snowflakes in the world are alike? It's the same with Lyme. My second Lyme doc told me NEVER to compare myself to another Lyme patient (easier said than done) because the symptoms we each manifest, the way we each respond to treatment, and the way we heal is SO different. He's seen people better in 2 years and others sick for 10 years. Also, nobody knows how long we've had Lyme (I know I got symptomatic around late 2005 but who knows when I was actually bitten?). We all have different immune systems as well.

I also firmly believe DIET, that emotional well-being, meditation, integrative treatments (acupuncture, energy healing, EFT, reiki, IMT, etc.) and the right mindset are as important if not more than the drugs, herbs, and supplements themselves.

I don't think mind and body are separate. They are one entity and deeply intertwined. I think it's crucial to adopt a mentality of "Im not a victim" and have some core beliefs in something, ANYthing (I'm not talking about God only, even just the Universe, a tree, a flower, a special person in your life, just some deep inner fire that burns inside your heart and soul even on days you feel like the treatment or disease symptoms are going to literally kill you). That persevering burning flame inside you that KNOWS you are going to get through it, that sees this disease or any hardship as an OPPORTUNITY and a journey that is here to teach. Don't get me wrong, sometimes that flame is DIMLY lit, and I need someone to rescue me out of that pit of utter hell and tell me I will get through that dark tunnel. But it's there.

So the answer: I don't know when I will be better. I hope soon because I am pretty damn tired of this on many days. The path of healing with this disease is not normal like with others - it is non linear. NON-LINEAR. This is hard for almost EVERYONE to grasp, my parents, friends, non-Lyme literate doctors, and even me.

It is a rollercoaster ride from hell. Torture, hell, herxing, then a good day, then more torture, then just some bad days, then a few good days where you appreciate a 20 minute walk, and a day in the sun with no symptoms, then an hour of crippling exhaustion, and on and on it goes.

Question: Can the doctor give you anything to take for that ____(fill in the blank with awful symptom)?
Answer: Not usually. Nothing takes away certain symptoms - you have to ride it out. Some of them are bearable, but some of them are crippling and devastating and make you feel like you're dying, and if you're not, you WANT to be dead.

If there is anything that DOES ease a symptom - I have it. Narcotic, sleeping pills, every horse tranquilizer on the market, supplements to ease numbness in my feet and hands, tremors, whatever. Most of these things cannot be controlled by medication but certain things can help decrease inflammation and aid in detox of the cytokines produced by 'herxing'/'die-off' in the body. That is why we Lymies take SO many supplements and pills and all you normal people think we are supplement and pill junkies. We are not. I don't know any Lyme patient who takes LESS than 30 pills per day, sadly.

I know people just want it to be 'easy' on me and they wish I could just 'take something' to make the herxing and treatment and disease more bearable. But it doesn't work that way, unfortunately. It's their way of wishing things could be easier, and that I could get better faster. But speed is not the name of the game.

It's very caring of my friends and family to wan to ease my pain, but it's also a reflection of our society. We want everything to be QUICK and PAINLESS. Get it over with NOW. Get you better FAST. Take a pill and numb yourself out. Believe me, NOBODY wants my health back more than I do. But our American society doesn't see the strange blessings that come in disguise with a severely disabling illness or a life-changing event that is initially perceived as disastrous, horrible, "totally sucky." Anything event, be it severe illness or something else, that is not a good thing is perceived as total failure by some. To me, it has been an eye-opener. This doesn't mean there are not days when I want to jump off Golden Gate Bridge or scream or cry from all the fear and pain and angst that accompanies this horribly scary disease. But, I believe these things come to us to teach us something. And if we don't look at them as OPPORTUNITIES to change ourselves and our lives, then we have missed the blessing. And I've had enough health issues BEFORE I got Lyme that could have taught me this. I almost lost my life when a chiropractor dissected (tore) my vertebral artery in my brain and I was almost paralyzed and close to a possible stroke or death. Luckily, the Big Man above was watching out for me and saved my life. I didn't learn anything from that incident. I was on blood thinners (usually reserved for the over 60-population) and on high doses of narcotic painkillers for for 8 months. I had panic attacks, severe migraines, and other issues with my head and neck for 6 years following. It traumatized me and to this day, I am nervous when someone touches my artery/back side of my neck on the right side. I don't feel I took anything away from that experience that almost took my life. I'd be much happier had it never happened.

So you see, I think something was trying to get through to me. Some way of realizing a new way of living, and apparently that dissected artery and 7-day ICU visit and near death didn't do the trick. So now I have a disease that tortures and plagues me for over 3 years now. And yet, I've changed so much in the last 2 years, I almost feel I would never want to live the way I was before.

Ok, I digress. Back to the story about when am I better?....

No human can feel like they are improving when going through so much up and down, but we are. And the best judges of our progress are our loved ones and those who see us, because they can see when vitality returns to us. And I am lucky enough that I am very in touch with my body and can feel it. I can feel vitality returning to my body and healing occurring (sometimes) as I feel deathly ill from a treatment. Most importantly, I know what the mind believes, the body achieves. So I MUST KEEP BELIEVING.

So the long answer is...I don't know when I'll be 100% Mona again, but the more I am asked, the more I am reminded that I am NOT yet back to 100%. Each step forward, and even the ones backwards after that, I must believe, are each a step towards regaining a piece of me, whether walking or cooking a meal or being able to go to dinner or even drive is a huge feat for me and the happiness I feel from these small feats is indescribable. Gratitude to feel normal.

And I KNOW I will be jumping off cliffs on my snowboard, riding my mountain bike, hiking, happy houring, surfing, working, and generally spazzing out into the Mona that I once was. So why not enjoy where I am and watch the world and prepare myself to jump back in? (I will HAVE to read this profound posting on a bad day where I'm miserable and don't have any clue why this is happening to me. ha)

SPECIAL REQUEST: : Please don't say "oh what you're going through is so awful and sucks so bad..."

I always cringe when people say to me, "Oh that sucks what you have to go through" or "I feel so sorry for you." At the beginning of this journey, I felt sorry for myself. I was angry. I hated the world, watching people my age go by on their bikes, scooters, laughing, drinking, going to bars, concerts, hiking, working, while I sat glued to a couch and sometimes pressed to the floor in agony. I welcomed sympathy.

Then I was depressed, grieving the loss of what felt like SO much time of my life. Grieving all the things I could NOT do, could NOT be a part of, losing all this time to develop my career and gain experience as a civil rights and human rights lawyer, so badly wanting to make a difference when I could barely make a plate of breakfast and watched people briskly walk to work in their cute suits and heels outside my window. Then, on days when I felt better and could go to brunch with friends, or even make it out to a movie and a little jaunt up Fillmore street, I was exhausted. Back into bed, and my brief flirtation with real life was a cruel tease. It wasn't fair.

Then over time, I came to a place where I never looked back and never felt this was unfair. I don't feel sorry for myself and I don't want others to feel badly for me. It doesn't suck that I have to go through this; it's a blessing in disguise. Sounds crazy, right? It is a simple dissolution of form (thanks Buddha and Eckhart) of ALL my material identities, that most people, especially those my age, will never experience in their lifetime. This dissolution of identity - the Mona who can volunteer, work as an attorney, be a civil rights advocate, sit on the Board of my nonprofit, mountain bike, snowboard, surf, go out drinking or salsa dancing, cook meals for dinner parties, even walk more than 10 minutes with a friend in the park, go to concerts, twirl my nieces in helicopters over my head, chase them up the stairs, flirt with boys at bars, that is all gone.

I lost my physical and cognitive abilities, then gave up my job, my car, my apartment, my city, my life. My physical, cognitive, and even emotional faculties disappeared in many ways. So what was left?? Nothing??

Underneath all that with NO material identity to grasp onto, who was I? Was I nothing? Certainly felt like it. But no, I was me. Mona, just me, just my love in my heart that I still had to give, my personality, my laughter, my compassion, just me. And that - that which is truly real, which is truly ME - can never be taken away, even by a ravaging disease. And the gift in all this is that, through relinquishing these identities (albeit very involuntarily), I was able to come in contact with the real me. And most people don't ever get a chance to see that person, because nobody will quit their job and their lives and stop exercising and seeing friends and go into a hole for years of introspection, except those in religious retreat like a Buddhist monk or a nun or Hindu sage who go off into a cave or under tree for years.

I’m guessing most people will not relinquish everything voluntarily. Something I heard on the PBS documentary, The Buddha, recently: "There is no knowledge won without sacrifice and this is one of the hard truths of human existence; in order to gain anything you must first lose everything." .

Ahh, thank you Buddha!!! Finally, some meaning to the desolate, maddening, incredibly painful and also enlightening journey I have been on. I’m have been studying and practicing many aspects of Buddhism for the last 5 years, and I wonder whether this journey, ironically, is a hard but real way of learning this very tenet.

So, this gift, and YES, it is a gift, has been a blessing in disguise. My parents don't get this and I know they will read this and still not get it. I have come from my very own tree(most of you who me know this). I know many friends who get this (they're from San Francisco after all!) but even some who don't. And that is OK. Not everyone has to understand what this blessing in disguise is all about - it is for me to know in my heart and in the core of my soul. To carry forward through my daily actions, and through the work and life I will resume once I am better. I hope I can impart some wisdom to others in hard times, be it illness or other challenges, and of course save the entire world when I am better with advocacy and my law degree and enjoy limitless days of fun, but that will come with time. For now, it's me, myself, and I.

Again, I have digressed. I realllly have trouble keeping things short. But that's me!