As I have thought through this first blog entry over and over in my head, I can’t help but think of that old adage, life is what happens to you while you’re busy making other plans. I certainly had other plans. I had my life mapped out on a nice little path and I was very busy pursuing this path. However, life took over and the ensuing journey has created a myriad of new potential designations. That said, if I have learned anything in the past few years it is that life is all about the journey, not the destination.
Of course, my case is extreme with extraordinary circumstances. I developed a serious and potentially life threatening illness at age 28 which caused life as I knew it to come to a screeching halt. I was forced to stop working just as I was hitting my stride, and in many ways, stop living. All my energy was focused on receiving intensive and essentially life saving treatments. However, I don’t think this realization about life’s journey is limited towards someone who becomes ill. We live in an age where there are many paths, not just the treadmill that we were set on as kids. I hear remarkably similar sentiments from many of my friends. Many of my female friends were raised to be career women, just as I was. We received wonderful educations and competed with our male contemporaries on every playing field. However, many of them are completely torn, unexpectedly, as to what they want from their careers and their lives as they become mothers. It no longer surprises me when someone confides that they have this idea of something else they want to do as they try to marry motherhood and career, and self. This realization is not limited to my friends becoming mothers. At this point, I have lost track of how many friends of mine have reinvented themselves regarding their career.
In spite of the fact that we live in an age where we celebrate individuality and uniqueness, where we pride ourselves on our openness and acceptance, it shocks me as to how much we really do not want to be different. In fact, I often think many of us prefer not to celebrate our individuality, but rather exist in a sea of uniformity. When I first was diagnosed, many people gave me advice on how to hide my illness, who I should or should not tell, when and how to tell my close friends and how much to tell them, how not to tell a guy on a date and how to massage my resume. In retrospect, I am not sure what made me feel worse. The fact that I was so ill or the fact that everywhere I turned I was essentially being told that I was no longer normal and that there was something wrong with me that I should hide. I could not recall doing something worthy of wearing a scarlet letter. As a child, I lived in a world that cared a lot about how things appeared on the surface. I was not prepared to do that again.
Therefore, almost since the beginning of my illness, I have been open and honest with my friends, colleagues, acquaintances and prospective dates about what was going on and this was not’t always easy. I can remember the first time someone shied away from me. I also vividly recall a date that I went on where were having a great time and after a four hour conversation on numerous life topics, I mentioned that I had been ill. He asked several questions which I answered honestly and I will always remember him saying to me, “you shouldn’t have mentioned that right away”. I remember thinking, OK, this guy just told me it would be better to lie than to admit to having been sick. And he was not alone in his advice nor was he the only person that I have encountered who would have preferred I lie to them.
When you think about it, knowledge and communication are our best tools in fighting an illness. They are the most effective means of empowering and fortifying people to fight and win the hardest battles of their lives. However, the societal reaction of how to handle a serious illness essentially compels a person to do the opposite. After all, how can you share information when you are so busy hiding how sick you really are?
Now, at age 31, for the most part firmly on the other side of the acute portion of my illness, I want to empower people to take control of their health and wellness in this country – and how people view chronic illness. The nature of disease has changed since the early 1900’s with the rise of modern medicine. It is no longer acute, but rather it is chronic. This change is the result of many different things, among them, public health efforts in hygiene, vaccines, the introduction of antibiotics and other advances in medication and technology. Today, we have many fabulous ways to treat illness that in previous generations would have proved fatal. The nature of disease has changed, but our attitudes continue to lag behind. This change has created a new phenomena of people who live with their illnesses and are capable of living complete and full lives. Almost half the US population falls into this category at some point in their lives.
I would like to invite you to join me on my journey, hear my musings, and become my confident…and let me be yours. The plan is to share my own experiences with the health care system from all sides, and to take our conversations deeper into how to pro-actively think about your health and wellness. I am happy to go first, but I really hope that you will decide to take the leap and join me! Together, we will become a resource for others trying to find information on specific diseases such as Diabetes, Neuropathy, Epilepsy, Cancer, Autoimmune Illnesses, Hypertension and to spark conversation on wellness related topics including, but hardly limited to: living with chronic illnesses, Holistic Approach to Health care, PMS, and Vitamins. We plan to move forward and also discuss some of the lighter aspects of health and wellness that are a significant part in prevention and living a healthy life as well.
Further details to come…
Hopefully, together, we can start to open the doors to some honest and helpful conversation.