People with MS, and other chronic illnesses, still have gifts, and talents, and can still contribute to this world.
Being in a wheelchair doesn’t mean that you’re deaf. I must include this on the list because many people with MS and other debilitating conditions use wheelchairs. A friend who uses a wheelchair complains to me about this all the time and I have experienced it myself when I’ve requested wheelchair assistance in airports and other places that require a lot of walking: When you are sitting in a wheelchair, people will address the person who’s with you rather than addressing you directly. They don’t even look at you and will ask the other person things like “What does she want?” or “Where do you want me to put her?” It’s irritating.
We’ve got hopes and dreams, too, but have some additional challenges to deal with; so, provide encouragement, and do some cheerleading for people you know who are living with MS or other chronic conditions.
Ihad the pleasure of interviewing Lisa Cohen, Self-Leadership Expert, and Author. She is a former music manager who is an MS Warrior working to empower others living with MS.
Thank you for joining us Lisa. Our readers would love to get to know you a bit better. Can you share your “backstory” with us?
Since kindergarten, I was consistently go-go-going on that “best and brightest” track — an “A” student, Ivy League undergrad and grad schools, then right into a high-powered New York City law firm working insane hours and completely sacrificing my quality of life. I soon realized I was miserable, finding my work to be way too limiting, and not a match for who I was, or wanted to be. That’s when I made a bold career change to exit the legal profession.
I paid off my student loans and leaped out of the legal field, without a net, in order to discover what I truly wanted to do. After some trial-and-error, and without a network or experience in the field, I created a career from scratch that I loved in the independent music business. I was truly driven to live a life that I felt I was meant to live.
I was still putting in insane work hours but didn’t think about it because I absolutely loved what I was doing. While working to develop my music business skills, I was also fortunate to discover a talent and love for photography, which allowed me to indulge and develop artistic urges that I’d stifled before.
So, here I was…an escaped lawyer who had finally found my “thing” managing rock bands, and their indie labels, and pursuing a passion for photography. Everything was going great. I was inspired, energized, and finally in what felt like my element.
Do you feel comfortable sharing with us the story of how you were diagnosed with multiple sclerosis? What did you do to not let that “stop you”?
One day, I started to experience numbness in my left hand. I thought that maybe it was a pinched nerve or perhaps carpal tunnel because I had recently been doing so much typing. The numbness came and went, then came back again. Several months later, I developed blurred vision and a sensitivity to light in my left eye. This all happened when I was booked to be part of a photo trek in Morocco. Although I was not at my best, I still went, and awkwardly shot with my right eye.
After I returned home, I woke up one morning and was numb from the middle of my back all the way down through my toes. I went to my primary care physician who, because of my combination of symptoms, sent me to a neurologist specializing in multiple sclerosis. In the summer of 2001, after an MRI, and a visit to an ophthalmologist, I was diagnosed with multiple sclerosis.
In an instant, my life was turned upside down. To be both struck with an illness, and the possibility of not being able to continue the work that I loved, was a real hard blow.
I found myself experiencing worsening physical impairments. Optic neuritis made daily activities, and photography more difficult, while the numbness caused mobility problems. The downtown New York City indie music scene, which had been my world for five years, was no longer physically safe for me because I was sick. I lived waiting for and wondering when the other shoe was going to drop. Was I going to be in a wheelchair next week? Tomorrow?
It didn’t feel reasonable to have dreams or try to still be the person that I used to be, even during times when my symptoms were in remission. I basically gave up and lived a small life for several years.
However, by nature, I am driven and a fighter. After letting MS hog center stage in my life for years, I woke up one day and realized there was no reason to stop being the person I truly was and wanted to be. I decided that, MS or not, I still wanted to live a life that rocks rather than a life on the sidelines.
With some trial and error, and many setbacks, I was eventually able to achieve that, in spite of my life being at a standstill for so many years.
Can you tell our readers about the accomplishments you have been able to make despite your chronic illness?
Things far beyond what I could have imagined have happened since my diagnosis. I’ve been able to continue to create art with a signature style based on how the world looked to me while I had optic neuritis. I helped to run a small nonprofit that served women with MS, where we were able to provide makeover workshops for several hospitals and National MS Society events. We were even honored at the Society’s 2012 Women on the Move Luncheon, in Westchester, NY. I’ve also had the opportunity to be photographed by world-renowned photographer Martin Schoeller for a billboard in Times Square as part of the Society’s ad campaign for MS Awareness Week. I also spoke at the Society’s 2015 Dinner of Champions held at the iconic Rainbow Room, been a Bike MS Champion for the Society for many years, and have been on the planning committee for its African American Conference since its inception in 2016.
I authored my first book, “Overcome he BS of MS: A 3-Step Plan For Women Living With Multiple Sclerosis”, and founded Rockstar Women With MS. I began my professional coaching studies, in order to help empower women living with MS to create, and enjoy thriving life experiences, and opportunities. I’m currently expanding that into my ciGoddess project to help women living with chronic illnesses create the lives they want with stylish confidence and authority.
What advice would you give to other people who have MS?
I would advise them that having a chronic illness does not have to dictate their self-image, self-belief, or possibilities. They don’t have to become discouraged and give up the way I did at first. I believe the bravest thing they can do is show up every day, no matter what chronic illness has thrown at them. It takes a special kind of courage to imagine, envision, and create a life that one wants, rather than settle for whatever life they are dealt.
I believe that even with a chronic illness, they get to decide whether they are going to make a mark in this world by claiming the essence of who we are, or merely exist in the world without tapping into their greatness. I also believe that technological advances and the Internet have given everyone more opportunities than ever.
None of us are able to achieve success without some help along the way. Is there a particular person who you are grateful towards who helped get you to where you are?
I am especially grateful to my father, who has helped and supported me in my endeavors my entire life.
How have you used your success to bring goodness to the world?
I’ve tried to support and advocate for the MS community through my involvement with the National MS Society, my nonprofit work, my book, and the current projects and coaching services I’m putting out into the world.
I hope that I’ve brought some encouragement and inspiration to people through these efforts, and I also hope that I’ve brought some beauty, and delight into the world through my artwork that hangs on people’s walls.
Can you share “5 things I wish people understood about MS or knew about people who live with an invisible illness” and why.
1. Just because we don’t look sick doesn’t mean that we are feeling physically well. People with MS or other invisible illnesses often hear, “but you look so well.” Because I currently use assistive devices (canes or crutches) to help with walking, it’s more obvious that I have a condition, so I think that people are more likely to get it when I say I’m not feeling well, but I know this is an issue for people whose symptoms are not readily visible.
2. With MS and other chronic illnesses, symptoms fluctuate and may cause us to turn down or cancel social invitations, so try not to take it personally. At times, fatigue can be far more debilitating than any other symptom. I recently turned down a last-minute invitation to go to a museum, even when a wonderful friend offered to push me in the available wheelchairs, simply because I just felt too exhausted to go.
3. There can be a tendency to discount or even dismiss people living with illness or physical disabilities. People with MS, and other chronic illnesses, still have gifts, and talents, and can still contribute to this world.
4. Being in a wheelchair doesn’t mean that you’re deaf. I must include this on the list because many people with MS and other debilitating conditions use wheelchairs. A friend who uses a wheelchair complains to me about this all the time and I have experienced it myself when I’ve requested wheelchair assistance in airports and other places that require a lot of walking: When you are sitting in a wheelchair, people will address the person who’s with you rather than addressing you directly. They don’t even look at you and will ask the other person things like “What does she want?” or “Where do you want me to put her?” It’s irritating.
5. We’ve got hopes and dreams, too, but have some additional challenges to deal with; so, provide encouragement, and do some cheerleading for people you know who are living with MS or other chronic conditions.
Can you please give us your favorite “Life Lesson Quote”?
“The middle of every successful project looks like a disaster” — Rosabeth Moss Kanter
We are very blessed that some of the biggest names in Business, VC funding, Sports, and Entertainment read this column. Is there a person in the world, or in the US whom you would love to have a private breakfast or lunch with, and why? He or she might just see this 🙂
I would love to meet with Michael Acton Smith and Alex Tew. It’s a dream of mine to create an app that supports women living with chronic illness, and I would love to hear their advice.