Friday, June 8, 2012

Words That I Wanted to Hear

In all of these years of living with lupus, there are certain words I have never heard.

"You will get better."
"You will recover."
"You will go into full remission"


I didn't gradually lose my ability to function. My experience with lupus was comparable to a truck crashing 60 mph into a concrete wall. In a very short period of time I went from juggling motherhood, full time career, and a fulfilling social life to a dead stop in which I could barely participate in a conversation, or crawl out of bed.

After the confirmed diagnosis, and some relief at finally having a name for this lupus foe that entered my life,  I started to bargain with my rheumatologist about getting my old life back.

I still can remember asking him, "When I get better how close will I be to the way I was BEFORE?"
He hemmed and hawed. Through appointment after appointment I persisted.
Finally he said, "Maybe 80%."
I accepted that answer. The poor guy. I think he wanted to offer me hope. Doctors must always tread carefully on a patient's hopes.

There has been no 80%.

And even if I had gotten up to that mysterious 80% boundary, not too many employers or people want only 80%.

For years I fought lupus; long hard knockdown fights in which I remained bolstered up by a dangerously high octane level of denial.

I would run into each lupus battle arms swinging, throwing my hardest punches... which were mostly mental. I would tell myself, "If I only try this diet, or that exercise regimen. If I avoid this, but take up that. If I rest in bed for a few days, if I just push through the fatigue and act like it's not there, then this will all go away."

I think that is the stage of grief commonly called Bargaining.

Denial didn't work.
Neither did bargaining.

So anger replaced my bargaining chips. I didn't know I was so angry. I was raised to be a "nice girl". Nice girls never show their temper. I lashed out everywhere. At people (whom I still apologize to every time I cringe with remembering how angry I was.) and  my anger took a peculiar delight in the all or nothing approach to not coping.

I used to be a professional singer and pianist. The disease damaged my shoulder joints and my lungs so badly that every attempt to play was like a marathon effort without ever reaching the finish line.

I was so mad about that, I didn't touch the piano for years. If I couldn't play perfectly the way I had before, I wasn't going to play at all.

And why bother singing? What ever for?

When I did try to play and sing, the music hit the deepest core of my emotional pain. Music can do that. And for me the experience was like the death of a loved one.

Over and over and over again.

So I punished myself by denying the joy that can also be found in music.

I wanted to hear someone tell me I would be able to perform again.

No one ever told me I could perform again.

I held onto the anger for a long time. Years. But, I still had enough of my old optimistic self left to try to make some sense out of all the things lupus had stolen from me.

I thought I was being punished for being so arrogant.
A priest told me to not even go there.
I thought I was sick because I had given myself lupus.
No, I didn't do this to myself, but I can bet you  that most people with a life altering disease wrack themselves over that question.
Was I a victim of pollution? Bad living? An extremely stressful life?
Maybe, but, there is no comfort to be found in that way of thinking.

Just more anger.

I scoured my Catholic faith. I explored the suffering of Jesus Christ. I studied the mystics who have been known to encounter profound physical suffering. I read the about the works of Mother Teresa and her words.

I filled myself up with inspiration about understanding others' suffering and about helping them.

Then  I explored other world religions. That underlying message of compassion threads its way through all the great teachings. I studied the concept of surrendering the ego. Letting go of this misconception that I am an individual. I practiced embracing the reality that humanity is all one and  that we are interconnected with all the living things that surround us.

Some where during all of this exploration, the bargaining dissipated. And the anger vanished.

I still can't tell anyone why I have lupus.

I seriously don't care why I have it any more.

But, I can tell you what lupus has given me.

And I can honestly tell you that although I want to be 100% healthy again, I would never have passed up this opportunity to live with lupus. Because this stupid disease gifted me with so much more than I could have ever hoped for myself.

I heard messages I never expected to hear.
 Messages from exploring spirituality and messages from others who are also learning to live beyond lupus:


And this is the message I send out to all of you.

If you are struggling on your own with lupus, please consider joining up with my Facebook group Bloom Where You Are Planted .

This group has been set up to provide a place on Facebook for people living with chronic disabling illness, those waiting to be diagnosed, and our caregivers to visit in order to receive and give support to each other in a compassionate setting.

When life has stopped you in your tracks, and you no longer may go in the direction you had wanted to go... plant your roots deep and strong where you now must rest and BLOOM WHERE YOU ARE PLANTED.

1 comment:

Jennifer Taglione said...

I really really REALLY needed this right this very second.
I'm still battling with all the grief stages over this diagnosis (diasgnosed jan 2012). Every day I move one day closer to full acceptance.

This week I think I found my purpose of "why me? Why did I have to get this stupid thing" and it's because I can help people.

But despite the excitement and joy I've felt from meeting new amazing friends I call my new family and the great things on the horizon, I've had a horrible "lay in bed" week.
So fatigued adn achy and just "not feeling good" and add a new symptom of stomach ickiness.

And then heard today that a friend is in remission. I'm so excited for her. But so jealous. Why her? Why not me? why can't i be better so i can work and go back to life?

And you just reminded me.... Because God (universe/buddha/whomever) has a purpose for me. He/She/It needs me to be this way to make the world better.

thank you again