Shining The Spotlight On Chronic Illness & Disabilities Q&A With Lisa
March 3, 2019
Hello and welcome back to Shining The Spotlight On Chronic Illness & Disabilities. Todays interview is with the lovely Lisa Sniderman.
Introduce yourself and tell us a bit about you
I am Lisa Sniderman, aka Aoede, an award-winning, quirky, folk-pop artist, playwright, and author from San Francisco, and I obsessively create to heal. I combine expressive and teaching arts to inspire young adults and kids at heart to positively impact them. I create and record unique, original full-length fantasy musicals on audiobooks that I adapt to musical theater stage plays. I’ve been honored with more than 50 awards for my songwriting, audiobooks, and stage plays since 2012 all while suffering from a rare autoimmune disease: dermatomyositis (DM), a progressive muscle weakness disease. My story is persevering through this darkness called DM for more than 10 years by obsessively turning to creativity to express and as a healing path. But my story and my life’s purpose is also becoming a light in the darkness and a muse. My new memoir, “A Light in the Darkness: Transcending Chronic Illness through the Power of Art and Attitude,” chronicles 10 years battling and coming to peace with chronic illness while creating to heal, and offers support, compassion, inspiration, connection, and encouragement to those who need it most-especially those experiencing transformations: illness, disability, or unexpected life challenges. I foster healing by giving your creative spirit wings and inspiring you to share your story! I founded an online community of artists creating to heal and collaborated with more than 50 artists from around the world who are also creating to heal, culminating in an online video showcase and live multi-media performances in December 2018.
Chronic illness(es)/disabilities I have?
My primary chronic illness is dermatomyositis (DM), a rare progressive muscle weakness disease that if untreated attacks and weakens my immune system and muscles. The incidence of DM in the United States is estimated at around 9.63 cases per million people, and DM is twice as common in women than in men. The main symptoms include skin rash and symmetrical, proximal muscle weakness (which basically means the muscles closest to and within the trunk of the body get progressively weaker). Since there is no cure for DM, one of the key medical treatments is immunosuppression, which inhibits the inflammatory attack on the skin, muscles, and other body systems. I’ve been dealing with the challenges of managing DM, trying to find the right combination of treatments, drugs, and therapies, since April 2008. The worst of it was a flare-up in 2010, when I was hospitalized for nearly a month with complete muscle weakness, then confined to a wheelchair and forced to undergo rehabilitation for many months to relearn the basics such as how to sit up, then how to stand, and how to walk and eventually how to sing and play my instruments again.
My symptoms/condition began?
Picture yourself: it’s six weeks before you are getting married; you are about to go on tour to promote your first full album, and you’re working full time, planning a high profile workshop. Imagine you get a skin rash out of nowhere and get an appointment thinking the dermatologist will give you some topical cream, but instead he tells you you have a rare unpronounceable disease and refers you to a rheumatologist… And you are only 35 years old. This was me in April 2008, starting when I inexplicably got a very red, itchy rash on my hands, nail beds and knuckles, and had cuticles that were painful to the touch, especially when doing simple things like washing dishes or pulling items from my backpack.
My diagnosis process was?
Fortunately, my diagnosis of dermatomyositis happened fairly quickly, even with the barrage of blood tests, skin biopsy, drugs like prednisone, CT scans, EMGs, MRIs and the like required to be conclusive. I attribute a quick diagnosis to having telltale signs of DM at the onset, particularly, a red-purple skin rash on my hands and eventually all over my body, and having a dermatologist familiar with DM to catch it and make the referral. That isn’t the case for so many people who go years without a diagnosis! However, the emotional side was rough as I was plunged into a world that was completely foreign, and as I mentioned, was just about to get married, so my partner and I had to consider what that might mean for us too. What started as a rash on my hands and then body eventually extended to my muscles, which became weaker and weaker over time, as well as fatigue, stamina and energy issues, which remain to this day. I was in denial for awhile, continuing life as usual until my body forced me to slow down and eventually to stop in 2010.
The hardest part of living with my illness/disabilities is?
Acknowledging and accepting that I have limitations; coming to terms with the fact that I am not in control of my body anymore; it marches to its own drumbeat now; surrendering denial and resistance and making peace with my limitations. I can’t just do whatever I set my mind to. My new normal is always having to choose one thing over another, not both. For example, I have had to say no to almost everything I was invited to do this month outside the house because of weakness and lack of stamina and energy. Also, I struggle with my identity as a disabled artist and am still learning not to base my worth on my achievements. Lastly, I have had issues sharing my personal struggles instead choosing to hide behind my artist persona, Aoede, and create light, happy, feel-good music and musicals. As I confide in my book: “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…”
People assume that?
I think that the people I’ve attracted in my life don’t make too many assumptions about what I ‘m going through, and we have the kind of relationships where they can ask me what it’s like, and I can share what I may need as well. Many of Dave’s (my husband) and my friends know that, as I like to say, my life is firmly cast in jello…meaning that my heart may be into something, and I want to support my friends, but I have to wait and see what my body will do on a given day so it is hard to make commitments. Our friends accommodate whenever possible, e.g., coming to our house and even bringing food or cleaning up, because they know I don’t have the energy to do that, and if I do have, I don’t have it for very long (lack of spoons!). Some of our friends, coming from a place of love and care, may assume that if I am up, out, have energy when they see me, that I am feeling better, or will say, you look good or you look better when they see me, not always fully understanding that though I had energy in the moment, I spent two hours napping before they arrived and will have to rest when they leave. I know they mean well, but sometimes it can make me feel defensive and I usually just pause and acknowledge and say thank you. I have been house bound for over 4 months dealing with a recent flare of my DM. I don’t think people that don’t have chronic illness understand the isolation or what it is like to not be out in the world every day. Also, when I am out with my cane, some people assume I’ve had an injury or accident and am recovering. I know because they ask me what happened! Lastly, some people seem to assume that I want to talk about how I feel or about my illness, because they are always asking me how I feel!
Take my wire fox terrier rescue, Alice, out in the early morning, then do some stretches in bed and usually fall back asleep or read some email. I make breakfast and then often rest again from the activity. Most of my day is spent in my place of joy, e.g., between writing, creating, and connecting with friends and fans on my computer, and my offline activities, such as playing guitar or uke, recording, or playing with Alice or hanging out with Dave watching shows, or talking while he often cooks when he comes back from work, or the occasional walk to our neighborhood park. I find that each day I am dream chasing, meaning that I check in on where I am in relation to my next dream and do new things to move me forward. For example, I want to share stories of artists who create to heal by making a documentary on lights in the darkness. I don’t have all the pieces yet, but I chip away at it, and the universe seems to conspire to help me along the way because of my passion, drive and fierce commitment to see it through. Lately, since the flare, I’ve been trying to achieve more balance: acknowledging my body’s need for rest while nurturing my soul’s hunger for creativity. It was because I didn’t pay enough attention to self-care while pushing myself too far (e.g., book launch, recording 45 video interviews, and producing a live/streamed multi-media show in December) that likely caused the flare!
The one thing I cannot live with out is?
Wow, what a great question! I will answer it the way I thought of it first: my pillar and rock-of-a husband, Dave, and my wire fox terrier, Alice are my immediate go-tos, and of course my other family-parents, in-laws, sisters (and family I choose) are all under the can’t live without umbrella! When I consider just how much love and support, caretaking, and encouragement Dave has given me through these past 10 years, it is so clear why I chose him as a life partner! I do not go life alone, so I guess I can’t live without the love and support of close family and friends! Practically, one thing I can’t live without is my twisty cane! I love that it is colorful and quirky and reflects my personality so well!
Being ill/disabled has taught me?
To see the gift in the curse! I am able to share my story and experience, and to create art and music to express and to heal while living with a chronic illness because of the hand I was dealt. I’m discovering that I can inspire and encourage others struggling with disability, illness or difficult life challenges and be a light in the darkness to them, helping them navigate through their own personal darkness. Also, that I am enough-exactly who and where I am-is enough! I also learned a bunch of go-to strategies, life lessons and shifts in mindsets that have helped me when I feel like giving up or I’m too tired to get out of bed! For example, find and immerse yourself in something you are passionate about; refuse to be a victim; know you are not the disease; be kind to yourself; acknowledge you will have hard days and better days and listen to your body. See more at: https://alightinthedarkness.info/resources/
What advice would I give someone recently diagnosed?
I would first and foremost actively listen. I would explain that I am here to support them in whatever way I can and hear where they were in their process and journey and identify and respond to any fears, concerns, anxiety and questions they might have. If they had DM, I would also share my experience and some online resources about DM and support networks, such as meet-up groups for their area, so they know besides me, their family/friends and their doctors, there is a whole community of people who can understand many of the emotions they are going through (and most of them authentically willing to share experiences, resources and assistance). I’d stress they don’t have to go through this journey alone! I’d share my life lessons above as well as my book for inspiration and remind them that though their dreams may change, they can still keep dreams alive and live with passion and joy while living with a chronic illness-that I’m a living example. I’d tell them to be kind to themselves and let themselves feel whatever they need to and to identify and give themselves what they need at the moment. I’d tell them they are not their disease.
My support system is?
Invaluable, vital and my lifeline… particularly as I mentioned, my husband and primary care-taker, Dave. I truly believe I am who and where I am today because of the love, support and belief-encouraging me when I am at my lowest, and enabling me and cheering me on at my peaks-as well as the day-to-day heavy lifting around the house, shopping, cooking, cleaning, etc. I am so grateful to have such an amazing life partner who also makes it possible for me to live in my place of joy and to create! I also am grateful for our family-my role models for their positive can-do attitudes while living with illness as well, my mother-in-law Florence who lives with Lupus, and my mom, who battles multiple autoimmune diseases. Our friends are also such amazing support and always accommodating to my needs. I think the important part is that everyone has support and knows they are not going through their illness alone, as support is so crucial to living and thriving with chronic illness! Our doctors are another source of support, e.g., having a rheumatologist who listens and cares, and involves you in treatment plans, therapies, etc.
If I had one day symptom/disability free I would?
Oh, be very active for sure!! Leave my house! BIKE! I haven’t been on a bike for years… Also hike in the woods without my walker and cane! Drive? I haven’t driven since 2010! I would go to an art museum-all the floors-and then meet a friend for a long lunch and then take a bike ride or a long drive and maybe go see a movie or go book or record shopping, go to the ocean, or take a one-day cooking, songwriting, musical theater or documentary film class (I often take classes online only), and I’d take Alice on a long walk and go out to dinner! Basically, having energy to pile activity on top of activity without having to rest or my body demanding me to stop would be a big change!! I would feel… free, unlimited, healed, healthy, energetic, strong, unstoppable, unbounded, alive.
One positive of having a chronic illness/disability is?
The impact I have been able to have on others by sharing my story and partnering with organizations to give back. For example, telling my story and sharing from the heart in 2011 at The Myositis Association’s Conference in Las Vegas, or at the Cure JM (for kids who have juvenile myositis) Festival in 2012 in Oregon. My hope was that seeing someone who shares their disease tell her story and perform would inspire the kids and give them hope for their own futures. Indeed, I received a note from one of the mom’s that read thanks for giving us hope that Eldon will be able to accomplish amazing things in his life, and that I gave a lot of moms a lot more optimism for their babies’ futures. Additionally, allowing myself to be vulnerable and share my story has enabled so many to share theirs! It even sparked an online community nearly 200 other artists from around the world also creating to heal called lights in the darkness! If I didn’t live with DM, perhaps I never would have started writing musicals that I recorded on audiobooks and adapted to stage plays, or delved into teaching, or shared my story and been able to be a light to others who need it! Also, having a chronic illness has forced me to be in and enjoy the stillness-to rest-to reflect-to be present-really in the moment and to treasure life’s little things and not take the outside world for granted, because I am not on go-go-go mode like I used to be pre DM!
The spoonie/disability community has been?
Amazing. Supportive. Compassionate. Generous with time, resources and assistance. Authentic. Primarily my experience is with the warm-hearted people I’ve met online, through Facebook chat and support groups for dermatomyositis, Cure JM and myositis, interviews on podcasts, and now, book reviews from chronic illness bloggers such as Nicola’s Parenting in Pain. Most recently, I’m also attracting spoonies into the lights in the darkness community! I only have experience meeting in person, other folks living with myositis a handful of times during the past 10 years, at keep-in-touch groups and conferences that were held in California. It is such a great community in general. Even though we all are struggling with our own issues, often while our bodies wage war on ourselves, it seems we make time to help and support others along their journeys… I know some of the groups can feel like everyone is always venting, and I chose to distance myself from that for a time because I didn’t want to constantly be reminded I was sick when I just wanted to create art and music, but there are opportunities to build friendships and feel heard, valued, and worthy as well. They are especially important when you might not feel like sharing the day-to-day details with your partner or friends of what you are going through or feeling, or have questions or concerns about new symptoms or a new treatment. The Mighty is another resource that has been an amazing online community.