It’s #TimeForUnrest Because My Friend Liz Deserves A Life Outside Her Bedroom

I met 12 year old Liz Burlingame in 1980 back when I was 23 years old and didn’t like kids.

Smart, witty, humble –  a little awkward, but a bright shining light with such a positive and endearing personality I couldn’t help but love Liz and make a rare exception to my “Children Not Invited” rule.

Joe & Liz Sept 18

Me and Liz on my birthday in 1982. She made a “Happy Birthday Mr. Joe” sign for their Newport Beach garage door.

Liz read books and was interested in current events and liked to talk about them – all traits we shared.  Liz was a nerd compared to her bouncy, athletic and popular sister, Lynn – which made her even more winsome to me.

But what sealed the deal for me was that Liz became the first fan of my fledging writing work – long before anything I wrote was worth the attention. Liz was interested in whatever screenplay or sitcom I was writing on spec or just talking about writing.  Liz was rooting for me from the beginning and has never stopped being the supportive kid sister I always wished for.

The one subject I never thought I’d be writing about is the one I’m now sharing here about Liz being sick and mostly bedridden for the past 26 years with Chronic Fatigue Syndrome that struck her down like Thor’s hammer.

This is the story of how Liz has had her life from age 23 to 49 (which she is today), robbed from her by a disease that many doctors still deny is real, know almost nothing about and are doing almost nothing about.

In this heartbreaking piece Liz wrote just last month she says,

I live in Atlanta, a city of 5.8 million people, home to the CDC, and noted for its medical facilities, but there are so few doctors here that treat ME/CFS that most patients I know travel to South Carolina to consult a doctor there.

I want to grab disbelieving doctors by the lapels and shout, “A little help, please!” Modern medicine has dismissed Chronic Fatigue Syndrome possibly because the name sounded so negligible. It sounded far more like a complaint than what it really is.

CFS is a disease.

Debra and I were close friends with Liz’s parents, Betty Ann and Dave Burlingame.  They were in their early 30s when we met them in the Reagan era and a couple we just clicked with. Dave had a great job and they lived the American Dream in a beautiful house in Newport Beach.  They were kind and generous and had us over to dinner and movies and game nights with the family when Deb and I were just starting out in our tiny Seal Beach apartment.

Thanksgiving with Burlingames (1)

Thanksgiving 1981 in Newport Beach with the Burlingames (left to right) Betty Ann, Lynn, Liz, Dave and me (photo by Debra Bushweit Galliani)

The Burlingame family were honored guests at our wedding in 1981, we spent our first Thanksgiving as a married couple with them, they were at our first Tree Trimming party and our anniversary picnic the following year.  We had nothing but great times together.

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That’s Liz (far right) at our anniversary party in 1982 looking at the camera in the bottom right.

But then the American Dream ended for the Burlingames. Dave lost his job, couldn’t find another one and then they couldn’t afford the house or the Newport Beach lifestyle and our best friends had to move to the Atlanta area where they had family and where it was far more affordable.  We were very sad to see them go.

Luckily Liz then became our faithful pen pal, writing regularly to Debra and me and we in return sent Liz cards and letters from all around the country and the world as we travelled.  We visited the Burlingames a few times in their new Georgia home, spent a Thanksgiving together and kept our friendship alive – but it was mostly Liz who was the glue, catalyst and close connection.

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Lynn, Betty Ann and Liz Burlingame in 1998 before Liz couldn’t do this any more.

I can’t remember when we heard that Liz was sick or when we found out it was chronic fatigue, but Liz knows damn well that it was in 1991 when she was just 23 years old. The same age I was when Deb and I got married.

Liz lost more and more energy and stamina and strength as her illness progressed with no relief or answers from doctors.  But she remained perkily positive and never wanted to focus on her own situation, only wanting to talk about what I was doing and what Deb was up to and telling us all about what everyone else in her family was doing.

In the first few times we’d come to visit, Liz could sit with us in the living and have dinner with us, and would seem like she was doing okay, or at least hanging in there.

But we’d later learn from Betty Ann and Dave that Liz always paid a hard price for putting out that kind of energy and would spend days just knocked for a loop, often in pain.

During my most recent visit, in 2013, Liz wasn’t able to get out of bed and only had the energy to visit for a very short time in her darkened room. Yet she still remained positive. “This girl is an angel, living on earth,” I thought to myself.

I’ve been too wrapped up in my own #YearOfJoe and hadn’t kept in good touch with Liz and the Burlingames for the past year and we missed sending her a birthday card – something we haven’t done before…

Just a few days before my own birthday, Liz wrote her piece for Unwell, which she didn’t send me and I didn’t know about until I found it by searching on-line.  This is what she said her life today is like:

On an average day, I spend some 80% of the time either in bed or lying down somewhere. If the weather is nice, I lie down outside, or oftentimes on the floor, (the floor is always flat and readily available), but I have to lie down. I cannot sit up for any length of time. Standing is doable but for only short periods of time.

Liz’s immune system doesn’t work right as a result of her ME/CFS as the medical community now calls it. But no one knows why.  And one of the reasons they don’t know is because they don’t spend the time, or the manpower or the money to try and find out.

What we do know is that Myalgic Encephalomyelitis (ME), first dubbed “Chronic Fatigue Syndrome” (CFS) or ME/CFS, is a devastating multi-system disease that causes dysfunction of the neurological, immune, endocrine and energy metabolism systems.  There’s nothing imaginary or  psychosomatic about that.

It often follows an infection and leaves 75% of those affected unable to work and 25% homebound are bedridden. An estimated 15-30 million people worldwide have ME.

Most of those millions of people who suffer from ME/CFS, like Liz are women – which is bad news for them because they just haven’t been taken seriously as a gender by doctors since the medical profession began.  Male doctors have been telling women it was all in their heads and that they were suffering from hysteria for generations now.

So Liz and the the others have had to rely on the nonprofits formed by the parents, families, friends and former patients touched by the disease who try to lobby for attention and funding but so far with little success.

Right now ME/CFS gets less funding then the study of hay fever.

Betty Ann Burlingame is one of the people lobbying now and a few weeks ago she sent her friends and family an email about a new documentary film that was touring the country and coming to L.A., “Unrest.”

Liz had already given me a heads up, back in January of this year, about a TED talk that Jennifer Brea, the filmmaker had given. But I was too self engrossed in my Community Choice Power work and didn’t watch the TED talk.

So on Monday night when I went by myself to see the film screen in Santa Monica I had no idea what I was in for.  It hit me harder than Trump’s victory in November.

For 97 minutes I had a tiny taste of what Liz’s life is like and it was one heartbreaking moment piled on another.

Most of the audience was there because they, or someone they knew, or someone they were currently taking care of, has ME/CFS.  We all sat in shell shocked silence, except for the crying.

When the film’s subject, Jennifer Brea, was struck down by a fever that left her bedridden and doctors told her “it’s all in your head,” she turned her video camera on herself and then revealed an entire community of invisible patients around the world.

The result is a film that immediately sucks you into its love story – as touching and beautiful as you will ever see.  “Unrest” is parts engrossing medical mystery, science discovery and political outrage – along with injustice and misogyny.  If it were fiction and not happening to someone you knew and loved it would be great creative story telling.

But this is real life documentary – and it doesn’t get any more real than the patient, crippled with pain, turning the camera on herself to share the torture she goes through just to get up off the floor an into bed.

And now we know what an infuriating, maddening, painful and agonizing life Liz and her fellow captives of this disease lead – where nobody knows, understands or often believes their reality.

Until 1977 people who had Multiple Sclerosis (MS) were in the same cruel situation – but then the MRI scan was invented and could easily show doctors the part of the brain affected and the reality of the disease’s presence.

There’s no such test for people with ME/CFS.

The hope Liz and filmmaker Jennifer Brea and the 2.5 million people in the USA who suffer from ME/CFS have with this film is that it gets some attention and specifically funding for research and a cure.

And the National Institute of Health (NIH) and Center for Disease Control (CDC) have fucked this up as badly as if they had that as their goal.  They have misinformed the public for decades and delayed the research and cure search for ME/CFS for so long that they are personally responsible for the suffering of millions of people they have ignored. And they’re not planning on upping their game real soon.

Unless we pressure the shit of them with tweets, petitions, calls to Congress and all the other things we activists have to do to get things done.  That’s why the #TIMEFORUNREST campaign is now part of #YearOfJoe

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Look.  I know the world isn’t remotely fair and that suffering abounds both physical and mental everywhere you look. Every day brings some new disaster, tragedy, disease or cause that needs your immediate attention.  What can I tell you?

How about this – If we spend the money on research, we will find the answers and treatments.  We saw it happen with AIDs and other immune system diseases.

I’ve tried for a long time to make a positive difference with my life, but the hard truth is that I haven’t done any good for Liz, other than staying in touch and visiting far too seldom.  Liz would probably cut me some slack because that’s how kind she has always been, but I know better.

Years ago I told Liz that she was my hero and that I was amazed at her positivity. I asked what kept her going and she brightly said, “I just want to see how it all turns out.” And I know that at that time she meant a cure that would allow her to regain the life she hadn’t had the chance to lead.

But a person can live only so long on hope, and last month, Liz wrote this:

Lately I have begun to feel like this disease has taken too much of my active life. It has been too long. And at this point I have no good options. I endure for lack of any better ideas. I cannot imagine that I will be this sick for the rest of my life, but it is equally unbelievable that I have been this sick for so long.

And all I can think is, here I am making a big fucking deal about how tired and burnt out I am from working so hard and how I’m taking a whole year off to have a #YearOfJoe’s worth of fun and Liz isn’t even getting a #DayofLiz, let alone the #LifeOfLiz she deserves and had been cheated out of.

 

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