What is your disorder? *
Dermatomyositis (DM)-a rare autoimmune progressive muscle weakness disease, which attacks and weakens my immune system, muscles and skin as well as my mind and spirit, and if left untreated, could result in complete muscle wasting and long-term disability, as well as other complications.
At what age did your disorder become a daily issue? *
Who were you before your illness became debilitating? *
An Environmental Scientist and Singer-Songwriter-and ME-someone on go go go like that energizer bunny-hopping from activity to activity and never stopping until my body forced me to! Like when I was diagnosed: I was getting married in 6 weeks, I was prepping for a Northwest Tour and releasing my first full-length album, and planning a huge environmental workshop, and taking lapidary and songwriting classes, all at the same time.
What would you do if you were not dealing with your invisible illness? *
Still be on my path to fostering healing and doing expressive and teaching arts-just wouldn't have to do it WHILE battling my DM-and maybe I would be packing more into my days..
What would you like people to know about your daily life? *
I am NOT my disease. I spend my days in my place of joy-creating, expressing, or sharing my art and music-mostly from home so that I do not have to focus on the illness, the disease, the darkness, the doctor appointments, the things I can no longer do. It doesn't mean I don't struggle daily with weakness, get tired easily, have little stamina and energy when out in the world. It means I must choose my specific activities each day so I can make sure I have the energy for those things that DO bring me or others joy, and rest if I am going to do a big activity. I feel blessed to choose how to spend my days. I feel grateful that I am able to rest when I need to. Some days, I feel isolated from the world, but when I am out, I don't take my surroundings or my activities for granted. I treasure and try to be aware of living in each moment. I am so fortunate to have an amazing husband and supportive family and friends, and the sweetest fox terrier Alice, (I feel like I'm HER support animal!) so I don't go it alone.
What would make living and moving in the world easier for you? *
If I had more stamina and strength! Otherwise, I use my cane when I am out, and bring my walker if it is a longer distance. I use uber or lyft to get around, so I don't constantly have to rely on my husband and can feel more independent. Also, MORE CHAIRS when I am in stores! OMG I feel like I have to walk and walk and if I only have my cane, I tire easily-but no chair!
Do you have any life hacks? *
What kind of support do you get from family or friends? *
I am blessed! I have surrounded myself with loving supportive family and friends during the hardest darkest moments, I learned that not everyone deals with sickness or caring for a sick person the same. I learned who stuck by me. Now that I have been living with chronic illness for 10 years, I find that most of friends get that I have limitations but don't really need to know the details of what it is like for me to go through my day to day dealing with DM. My husband is a saint and a rock. I swear I wouldn't be here let alone the person I am today without him as a true partner by my side. I love that he believes me, wants me to rest, gets that I have limitations and wants to care for me. I know how rare that is.
Have you ever had someone not believe you have an invisible illness because of your appearance and if so are there any examples that stand out? *
Not believe-but more like, WOW you look great! I'm so glad to see you feeling well! Or you look amazing-therefore you must feel well!
How has your invisible illness affected your relationships? *
Yes in that I no longer drive (I haven't since 2010) nor do I have a lot of stamina for being out in the world. That means that people who want to stay in my life often do it on my terms-e.g., come to me rather than me going to them. I am able to do more now, but that has been the case for many years. People who are close to me accommodate. Same with my crazy restricted diet-I've been gluten, sugar, and dairy free for 10 years! Another example, my Producer and I were working on a full-length fantasy musical audiobook. He lives in LA, but drove up to my house in SF Bay Area so we could work together because he knew it would be less taxing on me. Also, with my husband! I was diagnosed 6 weeks before we got married! So for all of our married life, it has been caretaker-patient relationship-especially when I flared in 2010 and had to spend a month in the hospital due to complete muscle weakness and then months of grueling rehab to regain my strength, relearn to sit up, stand, walk, sing and play. It has affected every relationship I have I suppose!
Is there anything you are afraid to tell people in your life? *
At times, especially because I’m almost always home, I feel like I’m hiding from the world, playing it safe indoors. Maybe that’s why I create light characters, focus on fantasy, and want to connect with my inner child. As I’ve taken on my artist-Aoede the Muse’s identity, inspiring others, I’m disinclined to share the scary, icky, fearful, sad, negative feelings—the secret spaces where I’ve stuffed my skeletons. I tell myself I have to put on a smile and be upbeat, not show weakness or have self-doubt. It’s much easier to tell the world that all is beautiful than to admit that living with a chronic illness is harder than anything I’ve ever faced; that some days it’s exhausting to get out of bed, despite my positive attitude and optimism; that I get tired of thinking and talking about being sick, and just plain being sick; that the endless therapies, drug cocktails, and unwanted side effects keep me on a roller coaster; that I resent having precious moments of my life replaced with 156 doctors’ appointments; that I wish I had more stamina for being in the world; that I wonder where David’s and my relationship would be had I never gotten sick—if he didn’t have to do all the shopping, cleaning, cooking, and driving, and we had an equal partnership instead of a caretaker- patient relationship.
Does the fact that your disease is invisible change how healthcare professionals treat you? *
I have had the same rheumatologist up until Oct 2017-so I felt fortunate and listened to...
What is your best coping mechanism? *
creating arts and music! (e.g., expressive arts-creating, recording, performing songs; creating and recording full-length musicals on audiobooks and adapting them to musical theater stage plays; sharing my story, writing and releasing my memoir; collaborating with 50 artists who use creativity to heal to share their stories; helping others navigate their personal darkness; being a teaching artist
What are you the most concerned about and the hopeful for in the future? *
Concern-that I will stay here at this place and this will be my best quality of life that I won't be able to get off the treatment-that there is no remission or cure-only manage and get the best quality of life I can; that I will flare and have setbacks and revert to the shell of a person I was in 2010 in the hospital and not have the enthusiasm and physical ability to sing, to play, to create; that I never know when I am doing too much until it is too late. I fear the unknown, particularly loss or change in security, support, and safety. In a worst-case scenario, being forced to work to maintain financial security could further stress my body, make my DM flare up, and land me back in the hospital, undoing years of recovery. I imagine losing my support, my gift of time, and my ability to live in my place of joy and focus on my art each day. I worry that I could change as a person— that I could lose my drive, my passions, my heart, and my spirit and have no room or interest to chase or follow my dreams if I were constantly stressed and concerned about making ends meet or getting sicker. I think of the negative impact such losses could have on my relationships with David and other family members, friends, and even fans. I can’t help but wonder if I even fear success because of what it might cost me. Hopes: I am managing for now! I am living in my place of joy so that is the best place I could be. I am hopeful I will continue to have the best quality of life I can. I am hopeful my energy, strength and stamina will improve over time. I am hopeful I will be able to travel, stay out in the world for longer, do activities that make me feel a sense of normalcy. I know I will continue to create to help me and others heal. Also, that there is a CURE for myositis in the future and better diagnosing so others (especially the kids juvenile myositis) don't have to suffer!
What is your favorite swear word?
HA! probably ass
Is there anything you want to make sure we talk about during the interview? Like an organization you want to promote or something specific that you deal with.
Love to make sure we talk about: my upcoming memoir: "A Light in the Darkness-Transcending Chronic Illness through the Power of Art and Attitude" Sep 21 publish date-and Myositis Awareness Day; and Lights in the Darkness-my collaboration with more than 50 artists who are using creativity to help heal to share stories of art and healing-live/streaming event in December 2018. Perhaps also success-what does it mean how has it changed etc. bc there are so many ways to think about success besides financial it is important to attract abundance into your life.
What is the hardest and/or best lesson your condition has taught you?
When life throws us curveballs; when we’ve lost our inspiration because of a significant change in health status, and when we live day in and day out with a chronic disease or disability, it’s tempting to want to give up our dreams, to play the victim. It’s easy to succumb to discouragement, self-pity, or even despair. But dreams and significant health challenges aren’t mutually exclusive. I’m a living example. We can live with hope, passion, and joy, even if the shape and substance of our dreams have changed. We can live well with chronic illness!
What is the best purchase under $100 that helped your life
My unique cane! It is twisted wood and multi-colored and so fits my bright, quirky brand and personality!