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

Cure Worship, Illness Gratitude, & Finding the balance between

To be thankful while you are suffering is one thing, but to be thankful for suffering….

Torments Granted by Gras by Natalia Drapina

Once in a while in the support group I administrate, there is someone who makes a statement that is so powerful, it catches me off guard and it sets my soul on fire. In truth, this isn’t a rare occurrence. I guess you could say that those suffering so deeply every single moment of the day have some profound insights to share. One thing that inspires me the most is when people say they are thankful for their illness. That is a bold statement that I believe one would never come to lightly- and no one would EVER openly say something so provocative in a support group setting among a band of individuals with severe chronic diseases, unless they truly meant it. That’s why it always gives me pause whenever I hear such powerful expressions.

It’s not unusual for those who go through a near death experience or a serious short term illness to find deeper meaning and purpose. It’s no less real, but it is more common when the storms have an end, and suffering can be left behind. While it’s not rare for those with ongoing illness to eventually find new ways to appreciate life again, to say they are grateful for their illness, it is so much more rare in cases of chronic disease. Why? Because an illness that is daily, constant, and does not see an end- is far easier to hate than to get excited about. A condition which may be degenerative, becoming more painful and physically or mentally compromising over time, isn’t easily beloved…as you can imagine. To me, it’s almost a miracle hearing that anyone would be happy or thankful that they became so sick. Others with chronic illness can find statements like these offensive, even. These ideas of “illness gratitude” certainly border on the extreme, but make one wonder where their personal journeys have lead them to truly embrace their infirmities.

 

The Germ of Spring by Natalia Drapina

I’ve heard people claim to be thankful they are in pain and chronically ill because it transformed their lives. It made them see the world in a different light. Their conditions allowed them to shake off the clutter and stress of a life that they realized didn’t have substance, and focus on a life of greater meaning and value. They once believed losing their career meant losing their purpose, but I’ve spoken to those who say that they are so thankful they became ill because now they found their true calling. Some have said that their new life of chronic illness has enabled them to be there for people in ways they never could have in their “healthy” life, so they are forever thankful for their new sick bodies, and how useful they can be to others through deeper compassion and connection. Sometimes people are grateful they are in pain because it has brought them closer to their faith, and they cherish a higher spiritual connection they never could have had without constantly being pushed to the edge of what they can endure. They are forced to cling to God instead of their own strength, and in that comfort, they find gratitude for suffering that brought them more enrichment spiritually.

Again, these are extreme statements, but thought provoking and inspiring nonetheless!

Most often, people I encounter long for a cure or pray to be healed. That’s normal, and that’s not at all unhealthy. Research in psychology equates the loss of health or a limb to losing a family member or spouse passing away. It’s earth-shattering. The losses just keep coming. With chronic illness, the grief starts over again and again. It’s cavernous, and there’s no end to the emotional roller coaster or the physical fight. Hoping for a cure, for healing, or for remission is what we all are desperate for, and that focus can at times become crucial for survival. But for some of us, restoration of health becomes a worship in itself, and begins to supersede everything else. Seeking a cure or healing can become such a focus that illness becomes nothing but a betrayal of God, of government, of doctors, and family. Nothing feels real except wellness and full restoration.

Obviously these are 2 opposite sides of the spectrum, and balance is always the goal.

When I was diagnosed at 22, I spent the first years asking God WHY? Staying up every night in excruciating pain, my leg felt as though it was breaking, nerves like being electrocuted and burning pain like nothing I could have ever imagined before. Full body spasms, tremors, the room spinning, my heart racing and palpitating, wondering how I had planned and worked so hard for everything that had lead me here, just to lose it to this “incurable degenerative” condition that no one seemed to be taking very seriously to help me try recover from. It didn’t make any sense. As much as I tried to analyze it, I couldn’t crack the code. It only made sense for me to get better, so I searched for my panacea, and prayed (demanding) that God must heal me. At the time, I wasn’t a big prayer person, but illness has a way of connecting you to your higher power. In the Bible, yes, there is healing, but there is also so much pain. The importance of learning through pain, finding ways to share strength or comfort inside of infirmities, these are scriptures that have been so encouraging to me.

I eventually felt lead to make a decision. I believed God would heal me, and I still do believe that is true. But, I decided that if I was going to spend any period of time living a “sick life” I was going to explore it. As much as I was desperate to go back in time, moving forward is all I could do, it’s all any of us can do- Even if it’s slowly, frightened, and with tears in our eyes. 

I cannot go as far as saying that I am thankful I am chronically ill. I can say that at almost 12 years, I’m so grateful I made that decision to press forward and try to find myself inside of this life. If I had stayed so distracted by my past, or so focused on what I might be losing in the future, I would have missed every bit of the beauty, the miracles, the blessings, the generosity of others, the opportunities to be of use, and purpose found inside of this pain.

*****

More than that, we rejoice in our sufferings, knowing that suffering produces endurance, and endurance produces character, and character produces hope, and hope does not put us to shame, because God’s love has been poured into our hearts through the Holy Spirit who has been given to us. Romans 5:3-5

 

I am content with weaknesses, insults, hardships, persecutions, and calamities. For when I am weak, then I am strong. 2 Corinthians 12:10

 

For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. Romans 8:18

 

When the cares of my heart are many, your consolations cheer my soul. Psalm 94:19

You are Never Too Messy to Matter

Over the last 10 years of chronic illness, people have told me that I will be healed if my faith is strong enough, that I am being prepared for something greater in my future, that all of this pain, loss, and disability will be given a special meaning some day. But, I believe that our lives are meaningful even in the midst of the darkest struggles. We don’t have to wait until life becomes perfect to attain purpose and perspective.

In the first couple years after I was diagnosed, college friends told me praying harder would heal me, one suggested the sins of my parents or grandparents may be expressed through my illness, family members sent me books about focusing on God’s healing promises, and I was prayed over for healing at church more times than I can count.

I was so angry and frustrated at everyone! God wasn’t healing me, I was getting worse! Why didn’t they understand? But no one did… I felt all alone to face this new monster eating away at my body and taking down my dreams and abilities one by one. I had such a strong confidence in my purpose, in my “calling,” and I didn’t know why those passions would be given to me, if only to be ripped away.

I do believe God has the power to heal my body. I also believe that healing can come in other forms as well. I used to pray and pray for my body to be healed, for the horrible pain to go away, and for my life to go back to the way it was. Of course I did. Of course I want my pain to go away and for life to be easier. Everyone in pain wants that! As life became a one-day-at-a-time struggle for survival, talking to God changed also. My heart desired to be of service to others (on support groups, online, in my relationships, etc.). Over time, I realized those prayers overtook the ones begging for physical healing. I believe there are different kinds of healing beyond physical wholeness that I hadn’t thought about before chronic illness, or during my first years living with it.

In each of the instances with my friends and family, they were showing up in the only way they knew how to offer hope and support. I’ve since learned that the people who show up are the ones to hold onto- sometimes they take some time and guidance to figure it out though.

During the storms in life, it is so common to be told that when the storm lifts, we will use what we’ve learned to help someone else, or we will have a greater sense of clarity. Well, when the rain doesn’t let up, when your body is constantly beating you up, if you are terminally ill, there is no waiting for healing to make use of your life today. Loss of health forces us each to look at our mortality and time in a new way. The desire to make a difference in the world doesn’t stop just because one’s legs, nervous system, or liver is failing. For so many remarkable individuals I have met over the years, illness can even inspire a new-found purpose, passion for growing in new ways, and redefining success based on what they hold most precious vs. what society has told them is of importance.

If you feel as though your purpose has been lost, and you don’t know why your life has taken this sudden detour, please know that you are not alone, and you are still on a path that is your own. You have not been forgotten. Your life still has meaning, even now- even in the mess you feel you are going through. You don’t have to wait for the perfect body and perfect life to be useful. If I had waited for that kind of moment, I think I would be waiting for eternity! Even in the middle of your struggle, your story matters. What you are going through matters.