A Voice Unheard: Author Interview with Chronic Pain advocate, Jane Gonzales

I am so happy to welcome, author, poet, blogger, and advocate for the chronic pain community, Mary Jane Gonzales!

I was given the great honor of being asked to contribute a piece for her book, A Voice Unheard. After reading it in its entirety, I immediately asked Ms. Gonzales for an interview! I know it will impact every reader, disabled and abled alike.

Congratulations on publishing your 10th book, A Voice Unheard.   

You have very generously allowed your powerful poetry to be shared here on a Body of Hope in the past, but this is your first interview here. I’m excited! Shall we begin? 

 

1. Did you do anything special to celebrate your 10th book release? or Do you have a traditional book completion ritual?

Well, it’s funny you would ask, because you had asked me that previously and my answer was no (I wasn’t planning anything special). But it started me thinking that this is a special time that will never come again. So, with your inspiration, I decided to have an event on Facebook. As to a “traditional book completion ritual”, my response would be “breathe”! 

2. How long have you been living with chronic illness? Would you mind sharing a little about your diagnosis?

This summer will be thirty-one years that I’ve had RSD, but it was undiagnosed for eighteen years.

 

 

 

3. Aside from writing, what do you enjoy doing in your free time?

My pastimes would be reading, writing and crafting (especially, card making and scrap booking).

 

4. It’s clear you have a talent for soul stirring, magnetic writing, but why are you passionate to write for the chronic illness audience?

Because that’s where I live; in a community with others like me, who understand me and don’t see me as “different” or “weird”. Plus, I want them/ others to know they are not alone and they are not crazy, which is how this syndrome can make you feel.

 

5. How was compiling A Voice Unheard different from writing a book like In the Blink of an Eye?

Well In the Blink of An Eye was a personal memoir written about me, and A Voice Unheard was written about  a community/ involving members of  the community. I found that to be a bit scary, actually.

Another difference between the two is that, when I wrote In the Blink of An Eye, I had already dealt with the issues and was reconciled to the situation. But that was not the case for where I was at when I wrote A Voice Unheard. And, for that reason, I couldn’t do it justice. I had the inspiration but I couldn’t write it in a way that would honor God. Therefore, it took me a year to write it, which is ironic because it’s one of my shortest books. Compiling the stories was easy and exciting because every story fit perfectly with what I myself had written. When that happens, you know it was meant to be!

Another difference would be that every book I had written prior had the stories first; then, the chapter titles later. With A Voice Unheard, all the chapter titles were inspired first and the stories came later.

  

6. How would you describe your personal writing process?

(For example, are you research driven, logistic, intuitive, spiritually moved, or other. Please explain.)

I think I’m all of these things to a degree, but, above all, spiritually moved. I can’t just pick a topic to write about. I have to be inspired, in order to write.

7. What is your favorite part of being an author?

My favorite part of being an author is the feeling I get when the inspiration is flowing. I also enjoy editing, which is probably an understatement, since I’m drawn/gravitate to it.

What is your least favorite part of being an author? 

My least favorite part is marketing i.e. self promotion.

8. In your new book, you described the world we live in today as “a microwave society.” This is a great terminology! For those who haven’t yet read your book, can you explain your meaning, and how this current mentality effects chronic illness survivors and our loved ones?

What I meant was, in our society, we want everything quick. We don’t want to wait for anything. So if someone gets sick or injured, and it continues, there’s no patience or tolerance for a lack of healing.

9. In A Voice Unheard, you share very personal accounts from fellow chronic illness sufferers. Why did you go out of your way to bring these stories into the light?

Because they need to be told!

 

10. In your new book, you cover practical but serious topics such as the importance of quality care giving, which you are always a strong advocate for, and you discuss hot-button subjects like pain management. Why did you feel this book was important to write now?

Because I feel the issues are critical and what’s happening is wrong. It’s one thing to have a problem, it’s another thing to have no voice, no say in the situation.

I wrote it now because I couldn’t be silent anymore.

11. Other than those who live with chronic pain and chronic illness, who else do you hope reads A Voice Unheard, and why?

I hope it is read by all. The disabled, to feel supported. The abled, to be made aware. Ultimately, to make a difference.

A Voice Unheard is available for your Nook, tablet, or download as PDF ebook at Smashwords.  

Interview was first published April, 2016

Chronic Illness and Surrender

Inspired Impressions by Danielle http://ccconvoitise.deviantart.com/art/Danielle-436267734

Oh friends, life is such a journey…. faith is such a journey. And I must admit that I get very weary. Like ground down to a fine powder kind of weary.

It is easy to say that God is in control. I know some who revert to that message like it is their refrain between sentences. We continue to push and plan and overcome, and then get angry at Him when WE fail.

When I was diagnosed with chronic pain in 2004, I felt like my adult life was just getting rolling. I had big dreams, and I was determined to keep moving forward with my own plans. 

My body was deteriorating quickly, however. I was taking so many medications, doing bizarre and worsening treatments as an attempt to keep up with family, home, work, college, church, small group, and any of my spare time I spent in a zombified pain daze on the couch. 

No matter what walking aids I needed, no matter the sickening treatment, no matter what the doctors said about “progression,” I WOULD NOT be diverted from achieving my original goals. 

I was in control. 

Though my body lashed back at me, I fought and squirmed and raged against it- to keep going on my path. 

Surrender is a difficult topic or act for most of us to comprehend.

I have always struggled to relinquish control, so everything about the idea of surrender goes against my nature. I wonder if anyone else reading this can relate to the word perfectionist as much as I could?

Years ago, when I was having ketamine infusions to try to tame my RSD/CRPS pain, I would interfere with the nurse’s vitals setup. In my mind I was helping, but to them I was only getting in the way, of course. 

“Do you want to do this yourself?” a nurse once snapped at me. 

Oops, I thought. But then…I knew my answer would have been, “yes.”

Why? Why do I think I’m the one who will always be most effective at doing for myself, even when others have my very best interest in mind? 

Then 6 years ago, after an experimental treatment they tried on me failed, I suddenly developed several comorbidities which have changed my life dramatically. My pain condition progressed far faster and worse than I ever imagined possible.

They say, don’t let chronic illness take over your life. But when your life becomes about: Breathing. Eating. Drinking. There is no “let” only “become.” 

Illness can become your life if survival becomes your new goal. 

There are some conditions you can’t fight through. You endure them. They change your body, and you are forced to adapt. You hit your “wall” every time you open your eyes. 

Surrender is the choice that my body made for me. It tells me I don’t have another option but to bow to its wishes.

I lay here still and unspeaking, careful not to sway the already offset balance. But the moment I move or eat or swallow or make a sound, my flesh laughs at me. My already swirling, screaming, breath-begging body will burst into flames and melt into nothingness. 

The world tells me to push, to fight, to Just. Keep. Going.

But I learn quickly that there is no push  in this game. Only tricks, and cheats, and strategy. 

It’s a chess match on a board I’ve never seen before, and my opponent is the only one with the rulebook.

Illness owns my body. 

There is no free will flesh. There is no- push for one more minute.  There is no- if I just take this pill.

This body has been exchanged, kidnapped, swapped for a rag doll.

Once, asking for help seemed an impossible exception only made in the most dire of circumstances. 

Now, all of my physical and earthly necessities selflessly come from the hands of those I most admire. The eyes I have always looked up to- now see me at my worst. My body gives me no choice but to surrender to their gentle hands, but my heart is humbled and grateful to receive the gifts of their bottomless compassion. What better picture of mercy than this? 

What better picture of grace?

Control freak. Feeling like a freak of nature. My natural systems are out of control. And nothing can be done, but wait. But pray. 

Miss “plan for tomorrow.” Plan for your dreams. Dream big. Don’t give up. Your body gives up.

My body forces surrender on its own schedule- though my Creator waits patiently. While my body may act as a prison, forcing the white flag of my systems- my spirit goes of its own fruition. The more I relinquish control, the more grace is endowed.

God is in control, they say. They say it like an empty cliche. 

Control is something I have owned. And something that has owned me. And God doesn’t control my will. I surrender it to Him. Child to Father. Tired, weak soul to loving, strength-lending Savior. 

In this broken body, I see freedom.

(Re-posted from 2015)

Author Interview & Book Giveaway! But God, wouldn’t I be more useful to You if I were Healthy?

Thank you, Esther Smith for joining us to discuss your brand new book, “But God, wouldn’t I be more useful to you if I were healthy?” Congratulations on being Amazon’s #1 hot new release in Christian Counseling and Recovery in your first week as a published author! Let’s jump in and talk more about your book!

1.    Did you do anything special to celebrate the release of your first book? ~or~ How did you reward yourself when you completed writing “But God, wouldn’t I be more useful to you if I were healthy?”

The night my book was released I celebrated with dark chocolate and a glass of red wine. My favorite indulgence. I am hoping to get out to my favorite restaurant this month, and that will definitely be a part of the celebration. To me celebration equals all of my favorite foods!

2.    Aside from writing, how do you enjoy spending your free time? (hobbies/activities)

I have had a hard time coming up with hobbies I enjoy since chronic pain became a part of my life, which is one of the reasons I turned to writing in my free time. But, I do enjoy reading, lying out at the local pool, and cooking delicious recipes.

3.    How would you describe your personal writing process? (Are you research-driven, methodical, intuitive, spiritually motivated, etc. Please explain).

 For me, writing typically looks like sitting down with an empty head and writing about a topic that is important to me without much prior thought. Oftentimes, I don’t know what I think about a particular topic until I put it into words on paper. It is the act of typing and writing freely without restraint that brings me to my best ideas. Then I come back later with research, additional stories, and more attention to detail. Those final changes are important, but it is the original brainstorming that gives life to my words.

4.    Thus far, what is your favorite aspect of becoming a published author? (designing the cover of your book, the writing process itself, doing interviews like these, etc.)

 I have loved hearing feedback from readers. It is the best feeling in the world when someone tells me that my book helped them in some way or that they were challenged to think differently by something that I wrote.

What is your least favorite aspect of becoming a published author? (the editing process, marketing, doing interviews like these, etc.)

I greatly dislike wearing all of the hats in the publishing process. I was not able to pay for help for any part of my book, so I edited it myself, though I am far from an editor. I also designed the book cover, though design is not my strong point. I would much prefer to focus on my strengths and get help with the rest. 

5.    “Resting as an act of faith” is one part of your book I felt was particularly inspired, and is wisdom that both well and chronically ill individuals can benefit from. Can you explain what in your own life lead you to write about resting by faith?  

For so long I tried to maintain the same life I had always lived even though chronic pain made this difficult. I became burned out, and my health started to regress because I was doing more than my body could handle. I maintained all my responsibilities because I felt guilty about giving them up. But I finally realized that letting go of what was physically harmful to my body was not something to feel guilty about. I realized that I was not stewarding my body well, and that being faithful with the body I had been given meant letting go of things that were good but harmful to me. It was a freeing realization and allowed me to better serve in the areas that I didn’t give up.

6.    One of your readers, Ginny asks: Did you have any hesitation in sharing the personal thoughts expressed in your book? (she adds that she can’t wait for your next book!)

Yes! My book was more personal than much of my blog. I poured out some of my deepest fears and failures. Releasing the book left me feeling so vulnerable. But hearing readers say that they could relate helped a lot. It all felt worth it in the end.

7.    Blog follower, Max asks: What was your greatest challenge in writing this book?

 

 For a long time, I had the basis of good material and important points that I wanted to convey, but I didn’t know how to make it interesting. Like I mentioned before, I did have hesitation about sharing personal thoughts and stories, so I left those out at first. As I read through my material and shared it with a few close friends, I could tell that the material was dry. Perhaps I was making good points, but what good was that if no one wanted to read it in the end? My greatest challenge was growing in my ability to write content that had solid ideas conveyed through interesting stories.

8.    Because I follow your blog LifeinSlowMotionblog.com, I know that you live with chronic pain. How has Chronic Pain influenced you or inspired you to write more often, or has it?

Before chronic pain, I would not have called myself a writer. It was chronic pain that gave me something important to write about. As I looked for answers to my own questions, I found limited resources on chronic pain from a Christian perspective. Many of the resources I did find were either lacking in depth or didn’t seem to understand the actual experience of chronic pain. As both a Christian counselor and an individual with chronic pain, I felt able to address the topic with both depth and insight. If not me, who else would do it? That is what led me to writing.

9. “Giving out of a poverty of health” was one of my favorite pieces of wisdom you shared in your book. Can you give a brief example (or explanation) of giving from a poverty of health?

 At one point my health regressed to where I could only work at my job as a counselor 2-4 hours a week. And even that felt almost impossible to maintain. I would go in every Wednesday to see as few as one or two counselees and then drag myself home. It felt ridiculous to work so little, and I seriously considered quitting my job. I am so glad I didn’t. My one or two counselees mattered. I may not have counseled a great number of individuals, but I did my best with the few I had. 

10.    Can you give us a hint of the focus of your next book?

 I am going back and forth between a few different ideas. The next book in the Chronic Pain and the Christian Life series may be about mourning and grief in the context of pain and illness. Or, it may be about communicating our pain and relationships with others. I also want to write about the shame of chronic pain at some point. Too many ideas and too little time! But, I am working towards the next one coming out this fall.

 

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~Reader Reviews~

“This is the first book of its kind: reconciling faith with illness.”

-Mary Jane Gonzales

“It’s a wonderful book, it is most encouraging and well written. It’s an excellent read for both sufferers of chronic pain and the people who care for them.”

-Nancy Belz

“I love her honesty and the reflection questions that conclude this wonderful book- I found insight- comfort- motivation, and hope in Esther Smith’s sharing. This would be a great book for a small group study in person or online!”

-Ginny Law

Read my review and others here

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How to win a free signed copy or e-book?

To participate in the random book give-away drawing, in the comments section below, let us know:

1. Where you found the link to this interview

2. Tell us where on social media you are sharing this link

I will contact the winner Friday, Aug. 5th! Good luck, and thank you for reading!

 

But God, Wouldn’t I be More Useful to You if I Were Healthy? is Available to purchase on Amazon in paperback or ebook.

Dear Body, I’m breaking up with you

Where to Go by SheerHeart

There are many things you can forgive your body for, but there are moments, relationships, days in life you miss which you will never get back, unforgettable, unforgivable events you are denied in the face of disability. My body is broken, and she continues to break my heart.

This is how those of us with chronic diseases struggle so deeply to have “self love.” Trapped inside bodies that attack us, and hearts which shoulder the guilt of our loved one’s pain from the hurt our illnesses have caused- child, love thyself. Love your abuser. Forgive the one which harms those you love the most. Forgive, forgive, forgive….

Body, you have taken my choices from me all of my adult life. Body, you are the abusive relationship I have never been able to flee. Body, you have stolen my health, my career, fun, freedom… my dreams. No permission was granted to you, yet you take all you touch. You are a jealous, volatile disease, and you only care about your own needs. I have suffered abuse and trauma at the hands of doctors on your account, though, you still batter me without compassion. I’ve been abandoned and made to feel worthless, INVISIBLE because of you body; I’ve had enough of your games!

Body, I break up with you. Sorry, not sorry.

I tear you from my soul and leave you. I will still care for you, because I am obligated. I am bound to you in ways I cannot choose, but I will no longer adore you. I will not call you my own. We are committed to one another, but I turn my back to you, body. From here on out, you will be “Body” and I will go forward being Me. 

This is my self love. This is my self compassion. This is my choice.

I rage against your victimization. Your assault on my essence is over. I choose to make my life despite you, in spite of you! 

I choose, I choose, I choose.

My flesh and bone surrenders, but my spirit rises up! Your reign, your emotional and psychological torture is over. Call it dissociation, call it compartmentalizing, call it what you will- it IS a detachment, and it is necessary.

I sign the papers and I box up your things. You can live in the basement and I will now and forevermore preside upstairs, in charge of THIS HOUSE.

Sign here X  _________________

Please support Rare Disease Day on February 29th. www.rarediseaseday.us