The Journal Project

I’ve written before about going back through my old journals and sharing what I find. I want to do this for the story and the art. I want to share how I’ve managed to live my life, learned to appreciate it, with a long term degenerative illness. I didn’t get a correct diagnosis until I was 57, so for most of my life I’ve had a mystery disease, or a diagnosis that wasn’t quite right.

I’ve kept a journal most of my life, but I haven’t kept the journals. I’ve moved around a lot, and I’ve destroyed what I saw as unnecessary baggage.

I remember going for a long time without keeping one, almost a decade. And when I started again, I felt so paranoid about writing down my thoughts, when I finished each journal, I would burn it. But then I stopped burning them and started to see them as friends, trusted places to share my fears and tell my stories. I was always afraid someone would read them. I had a terrible incident with my mother when I was a teenager, and she found a diary in which I talked about her alcoholism. Lord have mercy, she screamed the skin right off my bones.

Now, even after she’s dead and I’m a 60 year old woman, sometimes I worry that she’ll find out what I think, and be hurt and angry.

A journal or diary is a place to express sorrow and anger, as well as joy and triumph. Parts of my journals deal with my ongoing bi-polar disorder, with trauma, and with heartbreak. These are things we’re encouraged to keep to ourselves or to just get over. Some of us have histories we can never talk about for fear of depressing others. What do you think of that? I know that a burden shared is a burden lightened, but sometimes people just don’t want to hear about the more complicated and sorrowful parts of life.

I’m starting with the oldest journal I have, from 2005, when I was 45. I’ve kept it because it’s the journal where I started using a kind of personalized prayer to help me cope with my disability. And it’s the one I started using illustration and art as a way of calming and expressing myself. I’ll post highlights from it in the coming month, or however long it takes, then skip 10 years into the future.

Here are the first entry and illustrations:


March 6, 2005

7:10 pm

I haven’t been able to write in my journal for the past few days, since Thursday.  I had my appointment with the neurologist Dr. E, and got my diagnosis of possible Multiple Sclerosis changed.  He found no evidence of it, but found a spinal cord injury.  My 9th thoracic vertebra has an old fracture and is compressed.  We don’t know what caused it, how long it’s been there, (long, long time) and it’s not repairable.  The fact that I’ve degenerated over the years could be a combination of the injury and a malabsorption problem that has weakened me.  He wants Dr. M to give me a malabsorption workup.  The test Dr E gave me for Celiac disease came back negative, but, he said, I may still have problems with digestion and to NOT start eating wheat again.  There is really nothing he can do for me.  

It’s all very puzzling.  I know I fell out of the back of a pick up truck just as it was starting up when I was about 11.  I was sitting on the open tailgate with some other kids.  I wasn’t hurt enough to go to the doctor, but I wonder if that was the cause?  Or was there some violence from my father I’ve forgotten?  I remember throwing myself down some stairs at my grandmothers to get attention.  I think I was around 7.  My sister had really fallen, and she was getting all kinds of special treatment, I thought. (She was probably miserable.  All my fall did was make my mom mad.)

But if it was one of those old incidents why didn’t I start limping and having seizures til I was 16?  Why did it take so long for my bowel and bladder to deteriorate?  Why do I get these hot spots and tingly feelings up and down my legs?  Why are my reflexes so hyperactive?  Why am I so tired?  Why is it so hard to walk?

It’s so hard to deal with.  I made up this prayer:

Oh Great Spirit

Give me the strength

To live the live

You’ve given me.


Not that I have a real sense of who God is.  I just use prayer as a way of comforting and strengthening myself, of that feeling as a child that someone all powerful is taking care of me.  I remember after Amen, we touched our head, heart and shoulders: father, son and holy ghost.  I’ve made my own





I wish I knew what it was like to be, to be alive without having to first overcome so much, just to be at a normal level of life.  But this isn’t my fate.  Not today.


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