Brain Surgery May 9, 2013 – Chiari Malformation

May 9, 2013 is marked within the deepest part of her soul. 

It’s only brain surgery they said.

8 hours into a place of the unknown, she drifted to a deep sleep. 

You never know who or what may change your life – until it does.

And the 8 hours are up, she awakes to a new life – a life of chronic pain that can only been seen in her face.

It’s an invisible illness they said. 

She struggles to maintain her composure.

How does one live with pain, deep pain, pain that doesn’t discriminate and doesn’t stop to ask you your name.

SHE does, she struggles, she cries, she hurts, she screams, she writes, she draws, she smiles, because when time doesn’t stop, she can’t stop.

And when she asks for help, he says, I can’t take the pain, but I can give you something for the pain.

She continues to scream the silent scream.

Be grateful, be thankful – they say.

But when one has no other choice but to be strong, then strong she is. 

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May is Mental Health Awareness Month and being that our mental health is just as important as your physical health, I encourage you to get screened, get help or ask for help. There are both adults and children going through some type of mental illness – break the stigma, it’s not bad, you’re not crazy and you can get better by getting help.

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Photo: Max van den Oetelaar

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Chiari 1 Malformation and Mental Illness

While many of doctors that claim to have experience in Arnold Chiari Malformation would still say, Chiari is more “in your head” than anything else or “Chiari doesn’t cause symptoms” –  no further treatments need to be done, I disagree. I still like to describe Chiari as an invisible illness because I look so normal to the person in front of me but even as it goes unseen, it doesn’t mean that the symptoms and pain are psychological. If your current doctor continues to tell you that, “you are OK,” do not hesitate in seeking a second opinion and starting from scratch, find a doctor that does have experience with ACM. I got a second, third and a forth until finally in my search for new doctors, it led me to a great neurosurgeon in my area. Although, I haven’t found any research linking Arnold Chiari Malformation and mental illness, my experience with the disorder has led me to believe that self advocacy and self care is essential. The need to mentally help yourself, is important. I realize that even after having had two surgeries due to Chiari 1 Malformation and Syringomyelia, the mental challenges that come after going through such a traumatic experience is one worth talking about.

Can you remember the day when men dressed in white coats – surgeons, came to your hospital bed side to inform you of your test results, followed by the procedures that you will soon have to endure? Because even after having Chiari decompression and Syringomyelia laminectomy, know that none of these surgeries are a cure, these surgeries are needed just to prevent permanent nerve damage. Also, these surgeries are not a guarantee that they will help alleviate any of the current symptoms. So, whether mental illness has a place in your life, in form of depression, anxiety, social anxiety, baby blues, postpartum depression, autism, post traumatic stress disorder, eating disorder, substance abuse disorder, please know that you are not alone. Also, I encourage you to find your voice and find the courage to get help, professional help. Because like many things, mental illness has no one face, it does not discriminate and it can happen to anyone.

 

So, if we’re going to go down this honesty path and I remain true to myself, besides you knowing these tidbits about me, know that aside from being a brain surgery survivor, I have been dealing with depression, social anxiety and agoraphobia since my decompression surgery. Which according to the Webster’s dictionary, agoraphobia is a fear of open spaces, making it difficult for the person to leave their house. Please do not assume that I am cooped up in my home. It just means that it takes me a lot longer to mentally prepare myself to get out of my home and do things the “ordinary” person does so naturally. They include things like attend doctors appointments or go for a quick trip to the store. It can take days to mentally prepare myself to leave my house for a doctors appointment – at times at the end even canceling. These tasks are challenging for me, perhaps you are dealing with a different mental illness.

If you’re asking and wondering how I found all this out. Well, the turning point for me came in form of  a routine neurological visit that led my doctor to suggest I see a psychologist. Of course coming from a family where psychologists were ever mentioned, I immediately got defensive and declined. When the doctor – bless his heart, asked why, I quickly became defensive and said, I am not crazy. He then replied, “I am not crazy either and I see one, because after a 20 year marriage that came to an end, seeing a psychologist was a way I was able to cope.” This made me feel one, not crazy and two, open to the idea of seeing a psychologist. And as 2017, am now seeing a psychologist and psychiatrist, both of which work hand in hand to get me from feeling ill to feeling well. This is something hard to admit because society has placed a negative stigma towards psychology and mental health. It’s something that isn’t spoken about, it’s frowned upon and shamed. The last time I read on someone advocating on mental health was coming upon an article from singer, Demi Lovato. I think being silent on metal illness is so much worse than the topic itself. People build things up inside because they’re afraid, afraid of being embarrassed, humiliated, misunderstood or feeling the wrath that it would potentially bring. I want to embrace not only my new body that has produced six babies to which I proudly wear six scars. But also the scars left behind by Chiari. However, learning how to embrace and accept my new life after my Chiari 1 Malformation diagnosis has been challenging but also life changing. Chiari isn’t for the faint of heart. As part of my Chiari journey I want to feel free to find my voice and speak on how I work daily on my mental wellness. If you’re working on yours, never give up and if you haven’t started, know it’s never too late to start. I’m convinced this disorder is part of my life but definitely not who I am. Let me be the first to acknowledge that God continues to play a huge part in my journey to recovery – maybe not in the most ideal way because I am so flawed! My religion and spiritual beliefs have helped me in my recovery – I am Catholic. Spirituality helps in recovering from things like stress to mental illness. However, I do also believe that aside from my religion, medical help in the form of professional counseling and medicines also help. Mental illness is by no means anything to be ashamed of, seeking help in knowing how to manage it in the best way possible is important for your well being. The main goal is to lead a peaceful, meaningful life and to continue on the road to recovery, that is both spiritual and mental.

Also, know that it’s OK, it’ll all be OK, do not compare yourself to others, to other moms, dads, friends or co-workers, because to others we are either too much or not enough. And that’s OK too.

Happy day friends.

-Ana

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Photo: Pablo Gentile

Food For Thought – Parkland, Fl + Syringomyelia

While I am not here to debate, I did want to share my thoughts and feelings on Tuesday’s tragedy. I had what I thought was an important appointment scheduled on Valentine’s Day but later realized something else would be of greater importance. I had my 12th week follow up appointment following my November 7th Syringomyelia surgery. As we made our way to the hospital, listening to the news on the radio the report came in on what was just transpiring in Parkland, Florida. It was all just developing and any further detailed information other than location wasn’t being said. While we waited to be seen, nurses outside my room began to talk saying there were confirmed casualties, my heart sank. When we arrived home, we were immediately updated on the horror that was happening right in our home state, a shooting in a high school. Since then my heart continues to ache and my prayers have been with these students and parents. These parents that have lost their babies on this tragic day and the unimaginable pain that they are feeling. I also woke up not wanting to send my 3 older kids to school. I thought it was too soon to have our children return to school when such horror is still so fresh on our minds. I’ve spent the day between watching cartoons my little ones enjoy and going back for updates of what is going on in Parkland, Florida. It’s been a day of sadness, frustration and disappointment. And because I don’t want to go to a place of hate or anger, I chose to spend the day in prayer – constant prayer. It’s worrisome and frightening knowing this is the world my kids are growing up in. A world in which on February 15th every parent felt a heart wrenching fear as they took their kids to school, a fear that shouldn’t correlate with school. A lot is being said about mental illness. I believe that many think of mental illness as taboo. I live with Chiari and Syringomyelia, symptoms that include daily pain – life altering pain and discomfort. An illness that doctors have said, has no cure and surgery is but a relief. All this, all of it, takes a back seat when I take care of my son whom in 2011 was diagnosed with speech delay and later in 2016 with Autism and ADHD. This is real, mental illness is real and more needs to be said and done for our children. It’s not taboo and it’s a conversation worth having if it’ll change the social custom of our society. It’s OK to have Chiari, Syringomyelia, depression, anxiety, agoraphobia, postpartum depression, baby blues, Autism, ADHD and the list goes on and on. Also, we need to stop being silent and feeling ashamed of mental illness. My consolation in times of struggles and triumphs is the reminder that I am not alone and that the Lord is my Shepard – Psalm 23: 1-6.

Xo – Ana