I Still Haven't Woken Up

When I opened my eyes 5wks after my bleed I was made vegetative. This is still a coma, but open eyes. I never woke up. 

-Angela 10/11/2019

Pseudo-coma/Locked-In Syndrome definition.

Can be clicked.

It's a rare disease.

 

I haven't returned to work yet because I'm still in a coma. I will explain. The government plays up death, mine anyway, so hence my diagnosis is semi-vegetative. "Vegetative" is close to death. "Semi" was added when I didn't immediately die and started recovering abilities. You now get this from someone who is semi-vegetative. I doubt a vegetative patient can do this.

"Work" was a Behavior Specialist for a county mental health. Before that I ran an early intervention program for kids under 5 who were at risk of having a disability. Yes, I was in charge. It served 5 counties and took care of a big piece of northern California. When I went to Mental Health up in the mountains, I ended up as that particular county's vice president of First 5. (http://first5sierra.org/sierra-county-children-and-families-commission/ My county was Sierra.)

 

I already had a background rich in dealing with trauma. Disability is no stranger to me. You can see that my current network was full of professionals. These people were my friends. I got the best and brightest info as advice.

Now, how am I still in a coma?

I had an AVM in my head that bled (AVM stroke) in 2002.  I ended up in a closed eye coma for 5 weeks. This is the coma I never woke from. I never woke up! In 2003 I started opening my eyes. The government made me Vegetative- I was just in an open-eye coma. (How do you wake up if your eyes are already open? I just didn't speak.)

I did something at that time that is unheard of. I COBRA'd my work insurance and used my Social Security to make the COBRA payments. Do what you have to do and I did. I skipped all bills and used the private insurance to go to rehab. I was almost dead. The dead don't pay bills. 

Some called the thing in my head a brain tumor, but there wasn't any tissue. It was a blood vessel. Usually these things burst when they bleed, but mine hadn't. I still had a thing in my head that could kill me...like a tumor.

I did a second surgery at Stanford. It was experimental. The government never recognized this. That should have been when I "woke up." I think it's funny. If you ask the government what happened to my AVM, what will they say? Stanford removed it.

So "do what you gotta do." I've had a big loss, if you say me dying was the biggest. (My heart stopped in the beginning.) I just keep plodding forward. I keep telling myself to think about it later. We know those thoughts are the downfall. Dwelling on the past leads to depression.

I think this coma business is stupid. I was in a closed-eye coma 16 years ago and opened my eyes the following year. Look up pseudo-coma. It's more likely that was what followed the closed-eye coma. I went from coma to pseudo-coma. (I would think that these are  the people that understand in coma.) Only a few have come out of pseudo-coma. (Pseudo-coma is also known as Locked-In Syndrome.)