“It is not easy to be a pioneer- but oh, it is fascinating! I would not trade one moment, even the worst moment, for all the riches in the world.” Elizabeth Blackwell
Living with Parkinson’s as a women is a lot like being a woman in the field of medicine rare. (I must say I well am versed in the challenges of both) Although both seem to be increasing these days. Perhaps because we are beginning to take notice of the remarkable attributes, talents, and passion women possess. But, most importantly because we are now learning to stand up for ourselves for what we believe and fight for our own well-being and happiness. We are becoming better self-advocates in both arenas.
As a Hispanic woman interested in medicine, I was always teased and discouraged about pursuing a career in a “men’s” field. When I first developed symptoms of PD, I again was ridiculed for my outlandish claims of having Parkinson’s as a young woman; after all this was supposed to be an illness of predominantly older white men.
Apparently, I have never been one to conform to norms. I have always fancied myself somewhat of a pioneer for no matter where I am I always seem to be the exception to the rule (in who I am, what I think, and what I do- always sticking out as a sore thumb). Nothing seems to cause so much shock in people as me being a Hispanic female neurologist. Not unlike being a young woman with PD. Both usually cause some type of disbelief followed by wonder and amazement. How did I do it? How do I continue to do it? How do I seem to “have it all?”
It is hard for me to imagine a time when women simply were discouraged from becoming doctors when nearly half of all medical students at present are women. It is equally difficult for me to imagine a time when I did not know a number of young women with Parkinson’s. Despite these facts we women still continue to face challenges and have barriers to break.
When I first embarked in this Parkinson’s journey as a patient more than a decade ago, I set out to find answers for the differences in gender and published my first book on the subject: “Parkinson’s Diva: A Woman’s Guide to Parkinson’s disease.” For it seemed to me that many neurological illnesses like strokes, migraines and epilepsy had unique characteristics tied to specific gender. Women with these illnesses thus required special treatment tailored to their own needs. Similarly women with PD independent of age have different characteristics which separates them from their male counterparts. Many of the challenges women face with any disease unfortunately are directly or indirectly linked to socially imposed norms. For young women with PD, the challenges seem a bit more complex just like starting out in the field of medicine. We need to find our place while pursuing our passions, goals, and attempting to strike a so called ‘balance’ between work and family or on this case home and living with PD. If we don’t have the right support we can easily get swallowed up by our circumstances and barriers.
Although, I feel I have achieved many of my dreams and faced many stumbling blocks both as a professional as well as a patient – I have also been privy to many breakthroughs. I am glad to see so many embracing these differences and attempting to learn from these to enhance the lives of us who live with this complex disease.
Legacy of those that went before us: (especial thanks to Dr. M Schiess and to Dr. A. Nunez)
We must draw on the legacy of women all around to continue to make way in both arenas. These great women have been our mentors who have paved the way by showing me and others how to be a physician, a teacher a mentor, a mother, wife and now a patient. Because of their unwavering devotion and commitment to better lives of other women. They stood by me and supported me in my decisions to pursue my area of interest and nurtured my passion. They gave me the skills to look beyond what is before us to what might be. Not knowing that someday, I would use these skills to empower me and other women to become better patient advocates.
What we share in common:
We as a gender independently of our back grounds are united by the fact that multitasking is our way of life. One of the biggest impacts for me as a physician and woman has been the difficulty in multi-tasking that I have experienced since developing PD. It is this inability to carry more than one complex task at a time that has made me unable to continue to practice my beloved profession. But, it has also made me realized that this disruption in task performance can be extremely detrimental as a mother, wife, and daughter. Even when we delegate some of these tasks (like cleaning, cooking, shopping) to others because of our disease we are still ultimately responsible for the “emotional” work that goes into it. We still have to plan, organize, supervise the household, our work as well as our kid’s schedules and activities; while we make sure we assist their school meetings, performances, and keep up with their social and emotional growth. After all it is up to us how our children turn up as adults. We want strong confident, well-grounded sympathetic and caring adults (Not an easy feat even when we are healthy).
As a female physician, I knew that it was up to me to find that “balance” between home and career. Over the years, I have learned than that it is impossible to have it all. The balance in life comes not in being able to do everything and have everything but spending your time doing what matters most with those that are most important in your life. This is the true balance. This is also where being a woman doctor and a woman with PD parallel one other. In order to be successful at either, we must begin by setting priorities. We must learn to make decisions without allowing social norms to interfere with or dictate what the rules of our own life and home should be. What works for me may not necessarily work for someone else. I am lucky to have a husband who is a good provider but is also not afraid to help out with household chores when the need arises. He does not make many demands on me – however there are task which he simply won’t address, most of the time because as a man he does not think are important or necessary. He will chauffeur my daughter but rarely knows her schedule.
For all female physicians just like for all women with Parkinson’s having a strong support system is crucial to being able to weather any storm and share the daily burdens of trying to “have it all” or do it all. I dole out my energy to the most important things in my life. For instance being present in my daughter’s life is of the utmost importance. Everything else comes second. When deciding is like doing patient triage, I think about what needs my most immediate attention at the moment and what can wait. Practice doing this and I guarantee that some stresses will begin to melt away from your life.
Although we still have much to learn about gender differences in the area of PD. This is an exciting time. We are slowly beginning to see a shifts in the way we approach women’s health issues and gender differences in relation to PD. Yet, I like to see the minority gap close and the time to actual diagnosis of women be dramatically reduced.
But know that the strength lies within each one of you. Surely you can remember a time when you thought it was impossible to achieve something or get through a circumstance that seemed insurmountable but like me once I achieved my goal of becoming a doctor all the pain and struggle was worth the effort. You should hold on to your victories and triumphs to build your future upon. You were strong once you will be strong again! Use that knowledge to get through the toughest days with PD or any other challenge in your life and don’t ever give up. What has gotten me through all these years first through medical school and now through life with a chronic illness is first Faith followed by a bunch of perseverance and determination. Follow your passion whatever that may be …for me having a purpose to wake up every morning as made all the difference first in becoming a doctor now in being the best mother I can be along with building a legacy upon which all women especially those with PD can have a more fruitful and fuller lives. We all know it is not easy breaking stereotypes, forging new paths, and bringing awareness to issues previously considered taboo.
Learn to roll with the punches and learn from them…there is always a new dream even when the old one seems to have faded away.
All rights reserved by Maria de León