(Not such a) Peaceful Easy Feeling

6_zps3d841c08So.  Glenn Frey died today. This makes me sad and weary in numerous ways, especially given all the brilliance that has become ethereal in the past few weeks. It makes me sad as a fan, because the Eagles have been a big part of my “Life Mix-Tape Soundtrack” so far.

Years ago, I can remember going to see them on their Hell Freezes Over Tour in 1994, when they first reunited. My then boyfriend (now husband) and I saw them at Irvine Meadows.  We spent our last twenty bucks on a tour T-shirt, rather than the cab fare back to our car parked three miles away.  We walked happily through the strawberry fields in the dark, humming Tequila Sunrise and talking about how it was one of our favorite concerts ever.  Those fields are all paved over now, turned into industrial complexes.  We saw them several more times, shelling out whatever it took to hear those magical harmonies in person. Played them at our wedding reception. Danced to Desperado.  Played them at family parties.  Played them at my daughter’s sixteenth birthday.

So, in the same way it is always sad when a great talent that has meant something to you is gone, I am sad.

But that sadness is shadowed by something more.

I am angry.

I’m angry because of how he died.  I’m angry because Glenn Frey fought a battle with Rheumatoid Arthritis and Ulcerative Colitis, that eventually, coupled with pneumonia – caused his death.

It makes me angry that in a world that mostly dismisses arthritis as a side effect of aging, like grey hair – people are actually dying.  Not from all forms of arthritis.  And not in the numbers that other diseases decimate.  But still.  People die from this.

I’m angry that we haven’t found a cure yet.  I’m angry that each death rips open the closet in my mind and heart where I lock the fear – the fear that something similar could happen to my own kid.  Because even though her disease is not exactly the same – juvenile arthritis is not just RA for kids – they are similar.  And kids have died too.  Again – not in the numbers that other diseases decimate.  But any is too many.

It’s especially scary when you think of this star – who had tremendous fortune and access to ANY care he wanted.  Money did not save him.  It did not save my friend Debi who also passed last year. When her brother found incredible success and fortune came with it – he would have spent ANYTHING to make her well. It did not save her.  She was funny, and talented, and loving and she’s gone….and I’m still angry about it. I’m angry for my friend Cindy who lost her brother six weeks ago to this stinking, stupid disease.  I’m sad, and I try to turn it to gratitude and hope…. but for all the loss!  The loss!  I am angry.

Grief

It’s a stage.  A natural response that is part of grief.  I’m not even sure I am allowed grief for a man I didn’t know.  I did meet him briefly once – when he came out to support the Arthritis Walk in 2013 in Los Angeles.  I was just another lined up to thank him for lending his voice in so many ways.

So maybe I am allowed grief. Maybe a little.  But that’s not what the grief is about really, is it?  If you are a JA parent, or a person living with an auto-immune or auto-inflammatory disease – and perhaps you despise the Eagles – you are probably grieving a little too.  Because it’s like living it all over again a bit – the onset, the diagnosis, the roller coaster. Fourteen years after the diagnosis, a death like this puts the bile right back in my throat – the smell of the hospital back in my nose – and I relive the panic and horror and worry that comes when your healthy child suddenly isn’t.   Or maybe you are in the middle of real struggles with this disease now – today – and this is just like a bright light illuminating all of the struggle and fear. If so, I am so sorry…and also angry that you have to endure this!

And I know that eventually I will move on.  Tomorrow, I will be grateful again, for the ways that things are better than ten years ago, twenty years ago.  I’ll be grateful for treatments and hope and  I will use it, this anger – throw it like a log into the fires of my action, like fuel.  It will make me want to do more, talk more, tell more people – raise more money – keep working until we find a cure.

But for now, I am just feeling these not so peaceful, not so easy feelings.

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3 Responses to (Not such a) Peaceful Easy Feeling

  1. Kari Cupp says:

    Thank you for writing what do many of us are feeling. Continued prayers for all who suffer…..our kids certainly deserve better. You were one of the first people I met after diagnosis at the JA conference in Costa Mesa. Thanks for continuing to advocate for our kids!

  2. nicole080984 says:

    Colleen I NEVER tire from reading your posts! You write so beautifully and from the heart. I miss you guys! And I too love the Eagles 😉

  3. Shar says:

    Thank you so much for sharing your anger and frustration over this awful disease. I am 35 and our 2 year old (almost 3) was diagnosed with JIA, asthma, anemia, protein Intolerance, food allergies, ecema, and reaction airway disease. She is so sweet, loving, energetic, and smart. Her arthritis is throughout her body. Although she is so much better than she was she still suffers from chronic pain and was characterized as disabled by her doctor.

    My question is how do we cope with our (my husband and I)grief ,pain, and anger so that it doesn’t effect our daughter?

    How do we parent a toddler with JIA?
    She battles us on everything that is care related (taking all of her medications, bed time, sleeping in her own bed, getting into her car seat, brushing her hair…) We don’t want to be too harsh or too lenient. Somethings are due to her being pain.

    What fun things can we do with her or take her that doesn’t put her a risk of getting sick? She is on methotrexate.

    Exhausted and sad.

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