A Valiant Nap

No one talks about living with Chronic Fatigue Syndrome in bracing terms of “a brave struggle” like they do with cancer and other more understood and fatal illnesses. Or perhaps more to the point: more “legitimate” and acknowledged illnesses.

So this is what I have. After a good three years of bouncing from specialist to specialist with every diagnosis from cancer to candida to allergies to Lyme to MS – all of which have proven not to be the case – I finally had several throw up their hands with a diagnosis of Chronic Fatigue, AKA we don’t know what’s wrong with you.

Not so many years ago my friend and I were young go-getters on the studio lot and we prided ourselves on our incredible daily output. We could do our own jobs and at least two other people’s jobs on a daily basis and still have time for a stroll together to the studio café. I had enough energy to go to yoga class before work and a hike after. We were focused , efficient and effective. We were on top of the working world.

One day, my friend got an email from another friend of hers who was struggling with her MS diagnosis. This friend spoke in happy terms about the good days when she managed to brush her pet rabbit. That was all she accomplished that day and it took it out of her. Unless you’re dealing with a certain dreaded rabbit with “very sharp teeth,” this seems like it would, for most of us, be a simple task taking only a few moments. My friend and I scoffed. How could her friend do so little with her day and consider it an accomplishment? Did she have any clue what we worked through on a given day?

And now. Many days I can barely get out of bed. My head spins with dizziness that occasionally makes driving impossible. The fog in my brain comes and goes and makes it hard to remember conversations or sometimes string a sentence together. On bad days there is an annoying sore throat and stuffiness that never quite gets better or worse. I call the fog/throat “The Ick” and when I feel it creeping up, I always know the rest of the day – maybe week – is shot. I often wake up with it as my companion; the obnoxious house guest that won’t move along. Those days something as prosaic as walking to the kitchen to feed the cats makes me want to cry with its immensity.

Staying up past 9pm is a pipe dream and creates days of painful recovery when I do push it. Some days I get out of bed just in time to go teach my classes and return home as soon as they’re over to get right back into bed. My to-do list grows into an unmanageable mountain before me. I just can’t. To put it in what I assume are relatable terms: the tiredness feels like the mid-afternoon crash after an all-nighter with no caffeine to rescue you magnified by ten and nothing to make it go away. And you’re in the middle of an important but boring, long meeting and just have to focus. And you feel flu-ey minus the sinus symptoms. That’s what the bad days are like.

And some days I’m fine. I feel smiley and energetic. Not run-a-few-miles energetic like I used to be, but get up and function like a normal-ish person. On these days I get excited and plow through as much of my list as I can, knowing I may not have another day like this anytime soon. These days friends smile patronizingly and assume I’m faking on the bad days.

That’s the worst part; the unpredictability. I never know when I’ll be good or bad. I try to make plans but I often have to cancel last minute. So my friendships suffer. And that’s the worse worst part; the toll on relationships. Some mornings I’m up to a brief workout. That same afternoon I’ll get The Ick and have to cancel plans and I can hear that “but maybe if you hadn’t worked out this morning…” just under their understanding coos and promises to make plans again soon. But I know there is no cause and effect. It just happens when it happens.

Because what I have is not often recognized as a real disease, people often think I’m faking it, or being a baby, or that it’s not really that serious. “You don’t look sick,” they tell me. On one hand, that’s a compliment. On the other hand it would almost be easier if I had big oozing sores I could point to and say “no, see, it’s real.” Because people expect me to be healthy, I’ve gotten really good at faking health in short bursts. It’s easier than talking about it and seeing the looks on their faces of pity, skepticism, and rarely, empathy. My students have no idea that I often collapse after class. One day The Ick hit me hard just as I was leaving school. I crashed my car into a concrete pillar. I made it home sometime later in tears with shaking hands and a nice deep dent in my fender.

Family eager for another baby in the clan ask when my husband and I are going to get on with it. I smile and shrug. The truth is my body cannot support a pregnancy now. We just hope that this gets sorted out (and out of me) before the few short child-bearing years I have left pass us by.

I am at long last working with a doctor who not only understands but acknowledges what I have and can help me. She’s working with my body to get the root causes routed out and restore my immune system and energy. Thanks to her I have more good days and bad now. But I’m cautious. When the bad days hit they are a stern reprimand against taking anything for granted.

So, valiant fight against a killer? Maybe not but I certainly struggle to maintain a quality of life punctuated by small accomplishments and lots of naps. I’ve learned to be gentle with myself which was never part of my skill set, born as I was to be a Teutonic task master pushing myself harder than any coach ever could. I’m learning to be gentler to others. A friend’s sig file of that famous Philo of Alexandria quote: “be kind, for everyone you meet is fighting a great battle” has special resonance for me now. With that particular brashness of youth and health, I used to think that anyone who didn't accomplish as much as I did daily was just lazy or stupid. Now I understand that my former output level was a gift that I did not honor.

My friend's friend with the bunny doesn't know me but a part of me wants to write to her and tell her I understand now. I'm so sorry I ever mocked and discounted her struggle. It's been the most difficult object lesson of my life. And I am bravely struggling with is whether the world thinks so or not.

Polly-Who?

It’s been a long time. I would love to say it was because I was busy being fabulous or shepherding a burgeoning career along. Anyone who has been with me from the start will know I had a fairly Pollyanna outlook on life and my career potential as a writer. My tagline: ‘for the naive and hopeful’ pretty much says it all. As the years passed by I’ve lived a sort of Hollywood-adjacent life. After a while, I didn’t have a very Pollyanna outlook anymore.

I recently spoke with an eternally optimistic friend about life in general. He shared how great life was going for him and I was genuinely relieved. It felt so nice to hear about good stuff happening for a good person. When I replied with my laundry list of life he said “Jesus, how do you get out of bed in the morning?” It finally dawned on me: it’s not just me being whiny. I’ve had a shit-pile of a year and since that's what is, that’s what I’m going to write. I promise not to be morose or self-pitying (as much as I can). I will look for the humor and snark whereever I can. I’ll look for the lesson and the growth.

I’m going to start with the hard stuff: my mother is entering hospice care in a few weeks. My family is braced for that end and dealing with the emotional roller coaster as it comes. How does one go about saying goodbye to the person who gave you life? My father is aging and it’s not easy to watch. He forgets our wonderful, long conversations and chastises me for never calling. He is in a world of pain of his own making I cannot seem to reach or help him out of.

My husband and I live in a dark, noisy condo with a crazy shut-in for a next door neighbor who verbally assaulted and threatened me for the fact that my husband and I apparently spend our free time standing outside her door meowing to try to make her dog bark. Really? (Yes, I see the comedy potential there and I DID get to make my first police report so that was exciting.)

That same neighbor led the charge against us this year when we got a new puppy who had severe separation anxiety. In the end, we were forced to return to the shelter a beautiful dog who could have been a great family member given enough time and training. His loss ripped open the scab that was still fresh from losing my beloved Simon last year.

I do rewarding, important non-profit work that doesn’t pay much. It occupies my scant waking hours. I do the job of at least two people and am never able to get ahead of my to-do list or do the outreach I need to do in order for our organization to thrive. I spent a good chunk of time this year dealing with a vengeful idiot who was more interested in being right (though she was wrong) than in taking responsibility for herself. She, more than anyone this year, made me lose faith in humanity.

Underscoring everything is the fact that I’ve been sick for the better part of two years with what has generically been dismissed as Chronic Fatigue Syndrome. I’ve been poked and prodded by every specialist imaginable. I’ve been told I have cancer several times only to have the tests show nothing of the sort. (An “I’m sorry about the C word” would have been nice, Docs.) Most days I cannot function for more than four or five-hour chunks in between which I have to sleep. If I don’t, my body shuts down as in seriously: I crashed my car one day because I pushed too hard past shut-down.

I pretend that I am fine most of the time and people get irritated that I cannot be productive like I used to. They have no idea that it’s a struggle to be awake and that I can’t remember what I promised to do for them last week unless I wrote it down. Aside from the deep circles under my eyes, I don’t look sick so it’s hard when I find myself in the awkward position of convincing someone I am and not just making excuses for having neglected that to-do item. It has brought home to me the Philo of Alexandria quote that a friend signs her emails with: Be kind, for everyone you meet is fighting a great battle.

Then there’s my life’s mission. To write. I don’t write anymore. Except for two weeks in the summer when we go on vacation, my life is absorbed by these duties, dramas and disappointments. I came here to write and I don’t. That, more than anything, breaks my heart.

When I did write something, it was stolen from me and produced without crediting me. Someone I’d known it was a mistake to trust had lied to me and I hadn’t seen it coming.

When I look at it all in a pile like this, it seems to be a year soaked in tears and heavy sighs. To put it succinctly, I can’t do another year like this.

So I am pulling myself out. My blog header used to say something about believing in the dream and the day I couldn’t say that anymore would be the day I’d pack up and leave. By all accounts I should have left by now. But I am choosing to stay. I don’t know why, really, except maybe force of habit. Maybe there is a tiny speck of me that does still believe.

I am working with a new doctor now who finally has me on a road to recovery. My mother’s hospice is twenty minutes from me so I will get to spend many more hours exploring the mystery of life with her. I have a beautiful new niece who reminds me of life’s joy every time I see her. I have some wonderful new friends of wisdom and integrity and am slowly culling the crazies out of my life. I have some wonderful old friends who’ve stood by me. I see my daily work rewarded in the smiles of my students who find their power and live better lives because of me. Despite my best efforts, I find myself married to a lovely man who adores me and makes my days warm and safe. Together we run a screenwriting intensive in Tuscany in the summers and being in Italy yearly feeds my soul.

And I’m writing again. I have a wonderful new creative partner and there are interesting things brewing for us. I’m thrilled to have the energy and will to sit and write this right now. I may be a little rusty. But I am making a commitment to be back in the blogosphere for 2012 – this month marks the seventh anniversary of this blog. It’s going to be a strange, heart-breaking, wonderful ride. I hope you will take it with me.

Buono Come Il Pane

It’s always been one of my favorite Italian phrases. Good like bread. You use it to express when someone or something is solid, kind, wholesome – just good. Because what could be better than simple, nourishing, foundation-for-so-much-yummy-food bread? Turns out: lots of things.

Of late, I’m that girl at the restaurant who turns down the basket of dinner rolls, who asks for her eggs without the side of toast, who skips the pasta in favor of salad. Not because it’s Hollywood and I’m supposed to be a size two. Not because I’m following some higher path to spiritual health that doesn’t include the abuse of innocent wheat. Because after a long, redonculous medical journey, I’ve found out that bread is what makes me feel like crap.

For the last few years I’ve been constantly run down. Not just need-a-nap run down but bags-under-my-eyes, brain-dead by 3pm, narcoleptic by 9pm, running-on-fumes-all-the-time run down. I assumed that was just part of life in LA. All this Tinseltown glamour is draining, right?

Along with this, I started to notice various other problems. I was puffy and bloated in spite of hours of Pilates. Despite many applications of my fabulous Tom’s deodorant (family history of breast cancer = no more aluminum deodorants), I smelled. After Proactive, mud masks, facials, and all kinds of dermatologist-recommended extremes like never sleeping on the same pillowcase twice and never drying my face with the same towel twice, my skin was a constant zit field.

More seriously (yes, it gets more serious than zits in Hollywood), I started having weird pains. Crazy headaches have always been a norm for me but now I was also waking up in the middle of the night every few months with excruciating pain in my abdomen. The best way to describe it is it felt like something was ripping apart.

Now I come from a family of suck-it-up survivors. Once my dad nearly severed his thumb with an axe but did he go to the hospital? Nah, a few Band-aids and it’s fine. So naturally I didn’t seek any professional help for any of this. My boyfriend who comes from a crazy family of go-to-the-doctor-if-something-is-wrong people finally badgered me into going.

I started with an amazing homeopathic herbalist and then went through months of gastro-intestinal docs and OB/GYNs and all manner of poking, prodding, imaging and testing. The good news is I feel much better. The bad news is I have to say goodbye to lots of things to feel that way. Turns out I am gluten-intolerant. I haven’t yet had the blood test for Celiac but I know for sure bread is out.

The homeopath had me do an elimination diet and start on an herb regimen. Within two weeks of no flour products my energy was way up and my belly flattened. My skin cleared up and I haven’t had a zit since. Just to test it, I had a dinner roll and within ten minutes felt like someone had clubbed me over the head. So seriously, no flour.

She also had me off caffeine. I didn’t realize how addicted I was. Only a latte with breakfast, Officer. I went through two weeks of headaches and withdrawals and suddenly a new day dawned. I felt clear-headed, slept better and felt calmer. And suddenly, my natural deodorant works all day. I accidentally drank some caffeinated tea the other day and stank instantly. Wow, guess the body is not having caffeine for real.

What’s really amazing to me is how profound an effect these foods have on the body and how we mostly ignore the cause and effect. One of my best girlfriends reported similar miraculous changes in her life years ago when she went off white flour and sugars and I didn’t register it. I just thought: that’s great for her, I’m so happy I don’t have to give those foods up. Or looked at from this side: I’m so happy I get to keep trashing my body because it hasn’t given me a definitive break-down yet. We all know caffeine isn’t good for us but most people I talk to can’t imagine living without it. Likewise, most people have some degree of wheat or gluten intolerance but we continue to consume mass quantities of flour-based foods.

Turns out when the body is overtaxed with stuff it can’t process (wheat, in my case) or too much acids (coffee, tomatoes, mushrooms (!) all diet staples for me) it dumps into two places: the skin and the reproductive organs. The skin was obvious for me. The ovaries, not so much. Although it’s not definitively detectable without surgery, it’s pretty likely I have endometriosis, charmingly nicknamed the ‘working woman’s disease.’ It’s not clear if my two conditions are causally related but it was explained to me that the something-ripping sensations I woke up with were just that; ovarian cysts that were bursting.

So my break-down is here and now is the winter of my discontent as I say goodbye to breads and sweet-rolls and cake and waffles and pasta and cookies and crackers and cereal and flour tortillas and soy sauce (inexplicably contains wheat!) and breaded stuff and on and on and on.

The good news is having to automatically pass by the Krispy Kreme box at work means automatic weight loss. I can still have corn tortillas and Rice Krispies and stuff like that. And there are more and more gluten-free resources and products. My neighbor makes a gluten-free carrot cake that’s the best I’ve ever tasted. I found rice pasta that’s pretty close to the real thing. Great pancake mix that doesn’t leave that flap-jack brick in your tummy. Tasty gingerbread cookies at Whole Foods. I have a whole new world of baking to explore. Just how do you blend rice flour, tapioca flour and guar gum to approximate cookie dough?

More importantly, I have more energy, my late night pains are gone (for now), my headaches have been absent, my face is presentable, and my overall health feels much better. I miss some of those favorite foods but I have to hope improving my chance of someday having kids is worth it.

The moral for me is two fold: sometimes it’s OK to ask for professional help (my dad did eventually require surgery on his thumb since he let the tendons heal wrong), and buono come il pane – good like bread - isn’t.