Archived | Autism Speaks: Jenny McCarthy Press Tour for “Louder Than Words” | Circa September 2007 #NotAnAutisticAlly #Pseudoscience

Jenny McCarthy Press Tour for "Louder Than Words" Jenny McCarthy recently completed a press tour to discuss her new book "Louder than Words." McCarthy appeared on ABC's 20/20, Good Morning America, ABC Radio, The View, and Larry King Live.  McCarthy also appeared on Oprah and was featured on the cover of People magazine and in a video segment at people.com.  Jenny McCarthy is a …

Archived | Autism Treatment & Research Hearing: Statement of Bradley Whitford, Actor & Volunteer at Autism Speaks | Circa April 17, 2007 #NotAnAutisticAlly

Senator Harkin. Thank you very much for your statement, and thank you for taking your time to be here today, and for all of your involvement in this issue.Next, we'll turn to Mr. Bradley Whitford, well-known Broadway and TV actor, who is probably best-known for his role, of course, on ``West Wing''. Mr. Whitford studied …

The Toxicity of “Autism Parent” Memoirs | Shannon Rosa | Circa March 3, 2018

By Shannon Rosawww.squidalicious.com "When others don't understand our [autistic] experiences and don't understand how our actions are meaningful responses to them, they may think our actions don't make sense, and try to control them in ways that are harmful to us." -Elizabeth Bartmess I think it should be OK to write about our autistic kids. …

Snapshot | Google Alerts – Autism | Circa November 10, 2008

Google Alert - autismgoogle alertsx Google Alerts googlealerts-noreply@google.comNov 10, 2008, 9:54 PM Google News Alert for: autism Heartbeats: Help is out there for siblings of autism sufferersScarlet Scuttlebutt - East Brunswick,NJ,USABy JEFF WEBER • Staff Writer • November 11, 2008 Autism is a serious brain-development disorder, affecting about one in every 500 people. …See all …

It took a decade, but finally some pain relief with Functional Neurological Disorder | Life 2.0 | Eve Reiland

Yesterday at 4:51 AM · 

Eve Reiland | This is about 2012/2013 and back then tremors, tics and other movements were constant. I was having seizures all day long. This must have been a good day because I was out of bed working on art.


This past round of PTSD illnesss and flashbacks took some time. Took weeks and weeks I think. It’s hard for me to say … I just know it’s been a long while now since I’ve felt relief from it.

I believe it was in October I triggered. So it’s been months of up and down with this shit. I hate it. When I think I’ve got my steady back, bam, another hit. Some medications adjustment (yay for the new utterly life-improving pill!) Plus a few viral infections and a couple of stones passed (apparently I have a yearly quota) … finally. … Today, I’m feeling relief from it. Finally. Finally.

I don’t know how to explain it when it starts, though looking back, this time I actually do know the trigger, but often I don’t have the insight to realize I’m symptomatic until PTSD is absurdly interrupting my life.

Recovery this time is different. One, I’m not in the same level of pain I have been in for a DECADE. A decade of fucking hell. A decade of living in the worst pain you can fucking imagine without end, without a stop, without relief and, very often, without others understanding it.

The pain levels for my PTSD related- condition, functional neurological disorder, have been compared to ‘worse than childbirth’ and I’d say that’s a misnomer. Childbirth has a beginning, middle and end … and if it all works well, a baby to love at the end. (I don’t say that lightly, had a few myself to know the comparison.)

For a decade I’ve battled indescribable pain. Pain that makes me mad, angry, scream at walls and bawl on the floor. Pain thats so bad I finally quit crying because the relief was never to happen. Crying takes up too much energy.

Years ago, I learned how to focus on three things at once to help escape it. Music, internet, and something else like stimming to distance myself from it. Music is often my escape for just a little bit. No the pain doesn’t’ go away, but I’m not as focused on it. Even for just a little while.

Being in such incredible pain makes everyday life impossible. It makes working, parenting, thinking with focus impossible. It burns a lot of energy. Pain burns so much energy, I’ve often been far too exhausted to eat. I’ve been weeks without eating solid food in my past and have gotten far below weight I should be (and I used to be unhealthy and overweight.). Now I stick to ‘soft food’ or pasta (mostly pasta) these days to help avoid that exhaustion (and sensory overload) and maintain a healthy weight.

Regardless, if I’m in too much pain, I still won’t eat.

All these years I’ve asked for help to have a better quality of life and found none. For years I dealt with stigma and have literally been told by a neurologist, that if I believe what I have it will go away. I will heal and can go back to work. Have a real life again.

For years I tried so hard to believe my illness was Functional Neurological Disorder — but I never believed it enough apparently. Because after 10 years, its still here.

Do you know how much guilt I’ve carried because I couldn’t ‘heal myself?’Do you know how many times I’ve been at the ends feeling worthless as a parent and mother? (Believe me, others have jumped in and helped that feeling along too. It’s easy enough to do — especially if it means not taking responsibility for a fault their own and landing it on my head – or gives them some little private quirk of feel good at my expense and i don’t know why.)

Now, after ten years, a little pill, a muscle relaxer called flexeril has changed my life. Yes, I’m still disabled AF and have ever expectation I shall be for the rest of my life. Now though, I have a far better quality of life. My pain levels are cut in half … and it more pain that most live with on a day-to-day basis, but for me its a MIRACLE.

And something is healing. I can’t put it into words what’s feeling better, but I also couldn’t put into words exactly right the pain either. Being in far less pain has opened my eyes to the bigger world … like our apartment. Amazing how I can see dishes that need to be washed when I’m not battling with pain that feels like getting hit with lightening, electric burning in my skin, or my eyeballs are on fire. Most of my days are just trying to survive the bad stuff and praying a good day comes so I can do things like see my kids.

Muting the pain with cannabis has been my only help (and there’s no way I’d ever made it a decade like this without it. Thankfully I’m not able to take Norcos and never had the addiction issue – though I had been dependent on benzos (and not told their addictive properties and was a really horrible experience in 2013 coming off of them and having a psychotic break that damn near killed me. My doctor then helped me understand cannabis was far better than benzos.))

The difference today from all these years, I’m hanging on to memories. The flashbacks I don’t’ usually remember that well, or at all. When I do have memories of my previous life and remember them, they don’t feel like mine. It’s like pulling images out of a movie and rewatching them. All these years, its’ felt like I’ve been remembering someone else’s life. Yes, I know it’s my own, but felt detached somehow? Rather like I got a data dump of someone’s life in my head, had ability to sort through but none of it felt real. I often feel like an impostor in someone else’s life when those year are mentioned.

Hard to explain,but this past month, even with my bouts of illness and wellness, the memories are sticking. And three times now, I’ve spoken from memory to Bill fully feeling like those memories were mine, and from a merged point-of-view perspective .. that I was speaking for myself with both worlds merged. In a decade that’s never happened until recently. The feeling of it, is well .. mind blowing. I’m still sorting through it.

It’s amazing how much pain robbed me of my life. Robbed me of my days. Robbed me of a decade. At this point, I have a choice to make I can feel bitter about the time stolen from me by this illness, or I can rejoice and embrace a better quality of life that includes learning real life skills again.

So that’s what I’m working on a lot of lately: Life skills. I’ve been re-learning a lot of things – like housework, getting a better routine to be a better mom with my kids and so on.

I’m starting to track time again. For years I didn’t even know what year I was in, the season or month.So this is huge and taking some adapting.

I’m working on building up physical strength again too.

The difference is this little pill I take 3-4 times a day now. I am told it’s reducing the signals from brain to body. However, it’s working, I’m so thankful.May it continue to do so always.

❤ eve


The Ghost Beneath Me


Yesterday at 4:51 AM
·

This past round of PTSD illnesss and flashbacks took some time. Took weeks and weeks I think. It’s hard for me to say … I just know it’s been a long while now since I’ve felt relief from it.

I believe it was in October I triggered. So it’s been months of up and down with this shit. I hate it. When I think I’ve got my steady back, bam, another hit. Some medications adjustment (yay for the new utterly life-improving pill!) Plus a few viral infections and a couple of stones passed (apparently I have a yearly quota) … finally. … Today, I’m feeling relief from it. Finally. Finally.

I don’t know how to explain it when it starts, though looking back, this time I actually do know the trigger, but often I don’t have the insight to realize I’m symptomatic until PTSD is…

View original post 1,098 more words

Saying Goodbye To The American Dream | Life 1.0 | Eve Reiland

From the Journals | Published sometime in July 2010 | Life 1.0


There’s life after foreclosure. I know because I’m living it.

As I sit here, surrounded by flat cardboard waiting to be taped into boxes, garbage bags full of battered and ripped children’s books interspersed with shriveled banana peels, I’m relieved.

Yes, relieved.



Three years ago we moved back to Fresno to be near family, a new job and a chance to purchase our first home. Even more difficult than leaving the town we loved was trying to judge how the change would affect our oldest son who is Autistic.

Purchasing a home was easier than pulling money out of my 401k for the closing costs. The difficulty was in paying the monthly mortgage. But that was okay. We were finally living the American Dream. This was how it worked.

At least that was what I was raised to believe. You purchase a home knowing it will be financially difficult for awhile. The first few years you slave to the mortgage, pinch pennies and cut out extras and, after a few pay raises, it gets easier. In about five years, you breathe again, feel proud to own a home, watch rental rates soar above your monthly mortgage payment and know you did good.

What I didn’t factor in was multi-year wage freeze, a pay cut, becoming pregnant after 15 years infertility, living in the hospital for a month and missing a house payment. Not to mention that  my house didn’t gain value. It plummeted. In less than two years, it was valued $130,000 less than purchase price.

Thankfully, the bank was willing to work with us. As money-strapping as the mortgage was, we agreed to pay an additional large sum every month until we became current. That meant even some of the basics had to be cut. Trips to the grocery store would be sparse, and Top Ramen would be our once-again friend. Starbucks became a fuzzy memory. A precarious tightrope act began on which bills to pay and which to delay.

Each  month became more difficult,  as we were burdened with late fees and penalties. Then we learned about the Home Affordability Mortgage Program (HAMP).  Except reaching these folks was its own frustrating adventure of busy signals and two-hour hold times that abruptly disconnected. Months passed before I made contact with a human.

Still we persevered, jumped hoops, faxed and FedEx’d requested paperwork and were elated to find out we qualified for the trial period. Finally, hope and relief!

That was the beginning of the real tailspin.

“What do you mean you won’t take my payment?” I was stunned. The voice on the other end didn’t make sense. Why didn’t they want my money? “I don’t understand.”

“You’ve been dropped from the program,” the bank representative said. “I’ll take $14,000 to bring your account current.”

“This isn’t right. I’ve been making payments.”

“Yes, but you’ve been dropped from HAMP, and now you need to bring the account current. Partial payments aren’t accepted.”

“Okay so that still doesn’t explain why I owe fourteen grand. Where did my money go?”

She muttered something about a suspended account.

Suspended? I needed more information and was transferred to an account manager. Well, to her voice mail anyhow. Again and again. Several times.

My payments went into a suspended account. They weren’t applied to the mortgage. If I qualified for the permanent plan, those months would be been forgiven or rolled into the loan or something. 

The money couldn’t be applied to what was currently owed, and I wouldn’t get it back. If I lost the house, the bank would keep my money and any overage in the escrow account. Essentially, I lined the pockets of the bank while they moved me closer to foreclosure.

So yeah, my credit is trashed, the bills are really late or unpaid, and I can kiss my home goodbye.  I could be crying, but really I just feel relieved.

We’ll start over. A rented house is still a home as long as I have my family. With rent almost half our mortgage, we can invest in other ventures: karate, gymnastics, family trips, music lessons, and college for the kids.

The shackles are off, and we now wander free from the house we slaved to own. I have a husband and kids to love, a life to lead, friends to meet, new neighbors to make and a book to write.

So goodbye, American Dream. I have new dreams now.

The Ghost Beneath Me

From the Journals | Published sometime in July 2010 | Life 1.0


There’s life after foreclosure. I know because I’m living it.

As I sit here, surrounded by flat cardboard waiting to be taped into boxes, garbage bags full of battered and ripped children’s books interspersed with shriveled banana peels, I’m relieved.

Yes, relieved.

Three years ago we moved back to Fresno to be near family, a new job and a chance to purchase our first home. Even more difficult than leaving the town we loved was trying to judge how the change would affect our oldest son who is Autistic.

Purchasing a home was easier than pulling money out of my 401k for the closing costs. The difficulty was in paying the monthly mortgage. But that was okay. We were finally living theAmericanDream. This was how it worked.

At least that was what I was raised to believe. You…

View original post 598 more words