The INvisible Beauty In Pain campaign’s fifth artist spotlight is Suzanne Stewart

Suzanne Stewart  is from Canton, Michigan and has been a Chemo/angel and a patient health Advocate, since 2005. She has also been a fundraiser, blogger, writer, event planner & Mentor for RSD/CRPS & Chronic Pain, since 2007.

Check out Suzanne’s interview below:

When did you begin your career as an artist and what inspired you to pursue art?When did you begin your career as an artist and what inspired you to pursue art?

(SS) It was the 3rd year into my life with chronic pain. I was on an overnight trip with my husband & daughter. We found a small country store that had some beads and string. We got some little whale beads and made bracelets. It was great quality time spent together. I realized how relaxing it was and at that time I’d just started being a “chemo-angel”. I needed mail able gifts to send to people with Cancer. That’s when I started “Support In Jewelry”. I found hand painted ribbon awareness beads and started a website online and made jewelry for every type of cancer.

Then in 2007, I got worse and acquired the most painful chronic pain disease known. It’s called RSD/CRPS. Reflex Sympathetic Dystrophy aka Complex Regional Pain Syndrome. I started making all types of jewelry in support of all different illnesses. I donated it to different shows, conferences etc. I sold it and gave the funds raised to a non profit org. for the disease. In 2013, my CRPS went systemic or full body. It’s’ severe and inside of my whole body. I also live with R.A., O.A. and several other pain illnesses. I have a very hard time even making one item now. But I still try to do raffles, donations and random drawing fundraisers. I have one going right now for CRPS awareness month.

Do you have a chronic invisible illness?

(SS) I have several very painful and life altering Invisible illnesses. My disability started first with being approved for SSDI for PTSD, Battered Women’s syndrome and CKDII, in 1999.   In 2002 I was diagnosed with a TBI & was in brain injury rehabilitation for 3 years.  I was diagnosed with multiple injuries and had many surgeries. I have Dysautonomia/POTS and a dual chamber pacemaker. I had a heart attack and CVA, along with 9 surgeries.

In 2007, I was diagnosed with CRPS s/p foot surgery. Later in 2013, after a heart surgery, my CRPS which spread to systemic/full body CRPS. I found out that I have O.A. and R.A. along with Combined Immune Deficiency Disease, Degenerative disc Disease, multiple herniated, bulging discs in my lumbar & cervical spine and Arnold Chiari I malformation, which causes horrific spinal migraines. I have 20+ painful Invisible illnesses, but the last one that I will share is that I also live with a connective tissue illness called Polyneuropathy in Collagen Vascular Disease (it is = to EDS type 4 Vascular).

How old were you at the time?

(SS) My first time being diagnosed with a chronic pain, Invisible illness was after that car accident in 2002. I was 40 years old, recently re-married and had finally found my soul-mate (in 1997); and I had two teenage daughters.

What lead up to your diagnosis (symptoms, dr visits, etc) and how did you find comfort through art, painting, singing, writing or being creative?

(SS) A man ran through a red light and hit my char. When I awoke, my life was forever changed. I had never known chronic pain before that time. Since this accident, I have had many surgeries, multiple injuries & visited too many physician specialties. I had 8 years of PT/OT and 3 yrs. of TBI rehab. I was diagnosed with CRPS at my post-op check up following surgery on my right foot. It spread to both feet, legs, knees and then later to full body, systemic. It’s inside of my chest and my GI tract and now I have Gastroparesis due to the CRPS.

I went to my Hematologist office and they had colored pencil art classes for free. I tried going and enjoyed doing that. I started my blog “Tears of Truth”  I had been an Artistic Interpreter for the Deaf. I was in 2 Sign Language, choreographed performance groups. I love ASL and doing artistic interpretations of inspiring songs. I love to perform them even for myself, when I’m physically able. I even make You tube videos of inspiring songs that I do to American Sign Language.I have to learn the words first now, because I have 2 hearing aids since the brain injury made me Hearing Impaired. Then I started making jewelry as a way to be creative. I found ways to use my creations to put a smile on a cancer patients face, to donate to charities and to raise money for non profit organizations.

What do you feel is the most challenging aspect of your career as an artist?

(SS) Pain gets in the way now due to R.A., O.A. & the CRPS, along with the lesions that come with it. It really hurts to create now. I can only do one or two items a couple of times per year. Before 2 yrs ago, I made several items in a week. I still have several items that I’d made before I had to really slow down. As far as my Artistic Interpretation of uplifting/inspiring songs; this is challenging because I can no longer hear the words with the music. I have to learn the words and then put the music on and try to get it all together with my fluent ASL skills.

 How does chronic illness impact your process as an artist?

(SS) I am unable to create whenever I “feel like it” inside of my head and my heart. I have to make my jewelry when I’m physically able. I can only do a little bit at a time. Also, my hearing impairment impacts my ability to do artistic signing to songs. The chronic pain and hearing impairment keep me from doing the things I used to love to do. But I still try to do what I can do and when I can do it.

 What (if anything) have you found/ done that has improved your symptoms?

(SS) I’ve found other ways to be creative. I write and have become a columnist for a pain newspaper online & I write in my blog. I’ve written poetry that’s been hung in the Detroit’s Renaissance Center for Domestic Violence awareness month. I used my creative side as a “distraction” from my pain. It helps sometimes to use distractions. I love to do Artistic Interpretation of uplifting songs. Sometimes I even do it just for myself and my own needs to be uplifted.

 How open are you with friends & family about your illness & symptoms?

(SS) I am open about my illness but sometimes I try to hide the pain when it’s possible, from my adult children and baby/toddler grandchildren. My husband of 20 years, always knows and can see the pain increasing. He can see it in my face, my demeanor and the way I start to speak & act differently.

 What was the worst advice that you followed?

(SS) When my G.P. told me to start taking Fentanyl lollipops. I ended up being on them from 2005-2014. One day in December 2014,at my G.P. appointment; he told me it was his last day. I was lost with no place to go. I was afraid and then nobody would fill that script. I went through withdrawals and was so very ill for at least 6 weeks. It was very dangerous because I’d had a prior heart attack and a stroke. But I did it and I’ve made it and I never once “craved” them. My body got ill because it was dependent, but I never got a “high” and I never cared about taking them, mentally. I found a qualified pain Dr. and he’s helping me now.

 Outside of art, What is your favorite way to cope with your life as a spoonie?

(SS) I love being on my special ‘lazy boy’ chair, with my cat, Luna and just being home with my husband; along with “hanging out” online with my social media friends. Also, whenever possible, I try to go for coffee, lunch or dinner with our friends. I love to write stories, passionate pieces and poetry.

 What is it that inspires you to keep going, despite your illness?

(SS) What inspires me is the fact that I have outlets and I get to help others like myself. I love to be able to talk someone out of sadness/despair because of their pain. I also am inspired by getting to be married to the very first person who ever truly loved me. Inspiration comes from the feelings inside of us and the choices that we make. I like to feel love and to give love, that inspires me

What is one thing you’ve learned about yourself since your diagnosis?

(SS) I’ve learned that I’m not a “cry baby” and I’m stronger than I ever thought possible. I’ve also learned that the things that I thought could not do anymore, just need tweaking. I can still do some of those things, but just a bit differently.

What is the most important piece of advice you would give to someone newly diagnosed with an invisible illness? 

(SS) Get information, be educated in your disease(s). Find similar friends that will not bring you down, compete with you to be “sick” but friends who are true, loving and kind. Stay away from the people who bring you down. Keep being positive even when it gets difficult.

Is there anything else you’d like the readers to know?

(SS) I’m almost totally unable to physically create this jewelry anymore. The pain in my bones, nerves and joints just won’t allow it. I still do the best that I can. I keep trying every now and again. If I get an idea, I try to hold onto it, until I can act upon it. I also found and use my other creative tools. I’m a blogger/writer,a mentor and I hold onto dreams. I try to keep awareness and support going for invisible and very painful illnesses. I try to be a “glass half full” kind of person. I founded and am administrator for 3 support groups online for Invisible Illnesses, CRPS and an International CRPS support group. I’m in the midst of obtaining a donated room to hold “in person” support groups monthly at a local hospital. I’m excited about that.

For the rest of KNOWvember, we will feature the biographies and the meaning behind the works of art created by and donated to the INvisible Beauty in Pain Gallery by each of the thirteen artists that submitted work for this campaign.

All works are available to be seen in person at 540WMain and are a celebration of The U.S Pain Foundation’s KNOWvember campaign which you can learn more about by clicking here.

To purchase any of Suzanne’s jewelry pieces, email Calvin Eaton at asktheglutenfreechef@gmail.com and to learn more about Suzanne visit her at about.me/suzydukettes.