“There were some that shook their heads and thought this was too much of a good thing;
it seemed unfair that anyone should possess (apparently)
perpetual youth as well as (reputedly) inexhaustible wealth”
~JRR Tolkien, The Fellowship of the Ring
I have to admit, excitement is starting to build. In 18 days I will be heading to Kenner, Louisiana to have my case reviewed by a team of specialists with the Neuroendocrine Tumor Clinic. Dr. Eugene Woltering and his team are something of a legend in the NET community and I feel incredibly blessed to be able to have them review my case. This reason is not, however, why I am so excited. My sheer enthusiasm comes from the fact this will be the very first time in my entire life that I will leave the East Coast of the United States and I plan to enjoy every minute of my visit by playing the tourist when I’m not being poked, prodded, and scanned at the clinic. Thanks to this stupid cancer I now feel like a world traveler!
By looking closely at who this legend really is, I have come to appreciate my chronic illness and look at it as an opportunity, not a curse. I honestly feel that because of this chronic illness I have a chance to truly embrace every moment and live it to its absolute fullest.
Like I said in my last post, The “cabbages and potatoes” of chronic illness, I needed a hero to rally behind to teach me how to live well within my new normal and Bilbo Baggins came out on top. By looking closely at who this legend really is, I have come to appreciate my chronic illness and look at it as an opportunity, not a curse. I honestly feel that because of this chronic illness I have a chance to truly embrace every moment and live it to its absolute fullest.
In considering Bilbo as an example of how to live with a chronic condition, I began by asking myself several essential questions regarding the legends verses the truth surrounding his character. As the story opens, Bilbo is seen as a hobbit of some considerable notoriety. The other hobbits have become so embroiled in the “elves and dragons” surrounding Bilbo that many lost sight of the “cabbages and potatoes” of his nature. Based on this fact, one of the essential questions to ask is how does this situation relate to life with a chronic illness. Are there lessons to be learned from Bilbo’s situation that apply to adapting to societal expectations of the chronically ill? Looking closely at the conversation between the Gaffer, several residents of Hobbiton, and a stranger at The Ivy Bush, it becomes clear that the legends surrounding Bilbo have arisen from appearances only. No one truly knows Bilbo’s most intimate secrets and, when one testifies to the reality, the truth is quickly brushed off in favor of the legend. As one suffering from several invisible, chronic conditions, I can testify to the truth of this situation. Society has formed expectations based on the legends surrounding chronic diseases and has allowed these expectations to form the foundation of their belief, even when confronted with contrary testimony from those who know the truth first hand.
Let’s pretend for a moment that Bilbo is an allusion to someone suffering from a chronic illness. What is known about Bilbo and where has this information originated? What is gleaned from observation is only a fraction of a greater truth. All of Hobbiton knows that Bilbo mysteriously disappeared and then magically reappeared unexpectedly. When he returned, he had with him several bags filled with treasure he accumulated on his journey. From these basic truths, legends began to circulate that there are vast amounts of treasure hidden in the hill surrounding Bag End. To add to the mystery, Bilbo remains untouched by time. These facts coupled with Bilbo’s open-handed generosity, leads the hobbits of the Shire to form some harsh judgments of Bilbo; judgments that appear to be formed more from jealously rather than an intimate, personal knowledge.
The outward appearance does not truthfully testify to what is happening inside an individual. The outward appearance plus a knowledge of the diagnosis only provides half the story.
This leads to the next essential question, can appearances be deceiving? What the reader learns about Bilbo is established through the testimony of others, not by Bilbo himself. This external judgment fails to take into consideration the whole hobbit, and what is seen is only a small portion of his being. This is also true of chronic illness. The outward appearance does not truthfully testify to what is happening inside an individual. The outward appearance plus a knowledge of the diagnosis only provides half the story. Without the personal testimony of the individual, inaccurate conclusions are drawn. In my personal experience, I have found that this situation is exacerbated by society’s unprecedented access to information via the Internet. Today, one can log onto the Internet, Google a condition, and come back with a plethora of information that can be used to further isolate and alienate those with chronic illness. This same information, when accessed by those with a chronic illness, can increase feelings of hopelessness and isolation. Information, therefore, stands to be the biggest purveyor of “elves and dragons” when it comes to chronic disease and associated stereotypes.
What surrounds Bilbo with such negative press is that he is a hobbit who dares to dream. He throws off the shackles of societal expectations and does the unthinkable. He travels. He associates with strangers and queer folk. He goes on an unannounced journey and returns just as unannounced. Based on his lack of conformity, opinions regarding the source of his wealth and remarkable preservation all yield quite nicely to gossip, which, in turn, becomes the foundation of legend. Once this legend is firmly planted in the minds of the younger generation of the Shire, the truth fails to sway the popular opinion. As a source of legend and envy, Bilbo fails to find a moment’s peace. People are nosing around his property to get a glimpse of the treasure. His agelessness is the topic of tavern conversation. The effect of all the gossip causes, in essence, Bilbo the hobbit to disappear. He has become secondary to legend and no longer exists as a unique individual. This same phenomenon also happens to people with chronic illness. The legend surrounding disease overpowers any uniqueness of the individual and becomes the singular defining factor. This legend becomes identity and the individual is no longer defined by any intrinsic factor; once diagnosed with a chronic disease the individual disappears.
Since much of what society knows in regard to chronic illness comes from unprecedented access to information, more is known about the elves and dragons and so much less about the cabbages and potatoes. Even the most well-intentioned people can stumble into error and cause emotional harm by believing the legends. I am inspired by Bilbo because he defies societal conventions and lives life on his terms. This is an excellent example for those with chronic illness to follow. Just because one is diagnosed with an illness does not mean that the individual becomes the sum total of that illness. There is still so much humanity left that cannot be neglected. To neglect who we are is to allow the illness and societal expectations to become the defining factor and the result is that we cease to exist as unique individuals.
Follow Bilbo’s lead and do the unexpected. Travel. Get out and meet new people. Embark on the journey of a lifetime and savor every minute.
Follow Bilbo’s lead and do the unexpected. Travel. Get out and meet new people. Embark on the journey of a lifetime and savor every minute. One thing that the diagnosis of neuroendocrine cancer has taught me is that life is incredibly short and I cannot continue to live for tomorrow. I must embrace today. So, therefore, I am going to follow Bilbo’s example and truly live. The first step in throwing caution to the wind was purchasing a new truck and travel trailer. We are now in the process of planning a dream cross country vacation. I have always dreamed of seeing the West Coast and now is the time to make it a reality. I cannot wait to embark on this new adventure; but, in the meantime, we are enjoying short camping trips close to home. I may be sick, but there is still so much life left and I am determined to enjoy every minute.
Thank you Master Bilbo for setting the example and being a hobbit who dared to dream.
Tolkien, John Ronald Reuel. The Fellowship of the Ring: being the first part of the LORD OF THE RINGS. Boston: Houghton. 1994. Print.