The text below is something that I found and the author is most willing for this to be shared. Although it is written primarily from a transplant patient's perspective, I do think it applies to a cancer diagnosis also. On reading it I could relate to a lot of what is written and think it is well read and explains how things can be for anyone that is diagnosed with a major illness.
"I live in a world that is different from most. I face a different reality than that of your average 31 year old. Mine is a world which is very real, a normal for me, yet poorly understood by the majority. It is a world in which my every attempt to describe it will not even begin to bring you close to understanding the impact it has in all aspects of my being. And while it is impossible for you to step even briefly into my world and get an adequate sense of my daily life, it is also impossible for me to step into your world and get a sense of reality in what is deemed to be normal in the average American lifestyle.
Since 1994 I have been challenged by something much greater than myself, human capabilities, and at times, I have even wondered about God. Being diagnosed with gastroparesis at the age of 16 was only the beginning of what would turn out to be both the biggest horror in my life and the greatest blessing as well. Since then I have been diagnosed with a number of other conditions which have resulted in six accounts of cardiac arrest, among other complications, and eventually led to total gut failure resulting in the need for a five organ transplant to save my life. What was intended to keep me alive for years, IV nutrition, eventually almost led to my death. I often wonder what my world would be like if I had never developed these conditions and my life went in another direction. What kind of person would I be? What would my passions entail? How would my world and the world of those around me be different? What would my perspective on life be? Where would my priorities lie?
Although I often ponder these questions, it is impossible for me to begin to fathom what the results would be. My life has been so consumed by fighting to get around in a world submerged in medications, doctors, hospital stays, plastic tubing, needles, artificial food, and that plastic tape that peels off all my skin cells when removed. I don’t know life any differently. Since my transplant my life within the medical system has improved, but will never be to the point of complete independence.
While no one has full control over his or her future or daily events, my activities are even more limited by something over which I have no control. My world is not managed so much by the hustle and bustle of daily affairs and the lives of those around me as it is by my own body. While my friends and family must manage the challenges of full-time jobs, raising families, and social activities, I must manage the frustrations of dealing with the ups and downs of living with a chronic illness. As they make plans for how to manage their time and various events, I am unable to make reliable plans due to the unknowns and changes within my health multiple times throughout the day. My schedule includes ensuring that my medications are taken on time, every time, and within a certain number of hours of each other. My daily routine will never be void of medical treatments, potential complications, and reminders that my world is beyond average. Unlike a vacation from work, school, or other events, I will never be able to take a vacation from my life as a multi-visceral transplant recipient. My life is dependent on the accuracy in which I follow a certain regimen. I must avoid many things that others enjoy such as gardening, certain foods, specific types of environments, tattoos and piercings, and certain jobs due to the chances of picking up infections. I have to be very conscientious of my surroundings and ensure that I avoid or limit the amount of exposure I have to certain people, animals, and diseases that may not affect the average person, but could severely threaten my life and health. An infection in me is not treatable by a simple oral antibiotic, but must be treated aggressively with IV antibiotics in order to help my body be able to better fight it off. Being a transplant recipient makes everything more complicated and dangerous.
In spite of living in a world which is filled with pre-cautions, uncertainties, and a daily focus on doing my part to stay well, I cannot live in a bubble. I refuse to live in a bubble. In spite of the fact that I recognize some of the things that I do to enjoy life could potentially be dangerous, I choose to do certain things anyway. I am not allowed to own a guinea pig due to the risk of developing rotavirus. However, I have had guinea pigs since the age of nine and my life would be incomplete without a little pal. I take risks when working around kids who may be carrying around an infectious disease that I could easily catch, but then my involvement with my church would not be in the positions in which I most enjoy and have been gifted to serve. It’s all a matter of weighing the positive and negatives, the pleasures against the risks, and the advantages with the disadvantages.
One of the hardest things for me to deal with is trying to acclimate myself into more of a normal world as my health has improved, while it is nowhere near to the point of being independent in what I do or free from a life of health complications and treatments. It is tough to deal with what is considered to be a “silent” or “invisible” illness. While I am glad that I often don’t look sick and my health problems are not overtly apparent to the public, it is also difficult to deal with the discrimination, lack of understanding, and blank stares of battling serious chronic illnesses while looking perfectly normal. Although undoubtedly I have many challenges, people often don’t understand the measure of impact it has on my world because I am able to walk, talk, breathe, drive, and generally have a positive approach to life and do normal things while rarely seeking assistance or accommodations unless absolutely necessary. On the surface, no one would even know the struggles I have within or the level of pain that I deal with every day. I make an effort to push myself in spite of being weak, tired, sore, or nauseous. In fact, sometimes I push myself to the point of knowing that I am physically no longer safe to continue what I am doing, but rather than seek help, I often work through my own solution, wait it out, or continue anyway. I recognize that these are not the best avenues to pursue in many cases, but it’s tough because I want people to see me as being normal and I want to do everything on my own.
I have discovered that although dealing with a chronic illness in my last few years as a pediatric patient and through college, that it is actually more difficult socially to manage it now. Upon meeting someone for the first time, the natural first question is: what do you do for a living? It’s an impossible question to avoid! Everyone works…right? It’s a great and normal conversation starter in most circumstances, yet in my case it stumps me almost every time. Immediately, any efforts I may have made to postpone or avoid being labeled as having a chronic illness are destroyed. While I am passionate about what I do and proud of the accomplishments I have made in life to this point, there is no way getting around explaining why I do it. And, to top it off, I don’t do it for a living. At the age of 22 and straight out of college, I was unable to work full-time and was approved for disability within two months of applying. But needing something to occupy my time and help others in the aftermath of months of depression due to the postponement of my dream, the pursuit of my graduate Art Therapy degree, I started what would become the world’s largest support group for gastroparesis. Within one year, I had used that to start the only non-profit in the world dedicated to fighting gastroparesis. Eventually, because the two conditions frequently come together, we expanded into chronic intestinal pseudo-obstruction.
Every time I am approached with that dreaded question regarding career, I try to respond in the most positive light possible, yet there is no way getting around the immediate identification of me as someone who is suffering from a chronic, very debilitating disease. My typical response is that I am founder and CEO of a non-profit organization which I run from my home for gastroparesis and chronic intestinal pseudo-obstruction, two conditions from which I suffered which led to a five organ transplant in March 2006. Although I try to leave it at that in the early stages of meeting others, naturally the term “five organ transplant” brings up even more questions and leads me into a very complicated, albeit ice-breaking, conversation. There’s just no quick or easy way to explain what leads up to a five organ transplant or any portion of my very long and complicated medical history! This question is then usually followed by the question of my living arrangements. It is difficult for me to explain that I am unable to be independent and live in an apartment in the basement of my parents’ home. It is often difficult to connect with others in my age group because their world is so different from mine. They are able to talk about their careers, often marriage and kids, rent or mortgages, co-workers, and other social events. These things are unfathomable to me! I can’t even begin to understand how a person can hold down a full-time job, come home to care for a family, attend and/or organize social functions, and keep up with regular household chores and shopping. I feel as if I have accomplished something in a day if I manage to spend a couple hours focusing hard on one project, or making a trip out to run a couple of errands.
Although I try to step into their world and understand what their lives are like, it’s impossible for me to relate so therefore I am often left speechless and unable to carry on a routine conversation. At the same time, they are unable to understand where I am coming from and that the world I live in is impossible to step out of. While a career, family, and common, everyday activities dominate their lives, my life is filled with things that few can understand. It can be a one-sided conversation. Since it is much more common to do the things that they do, I can connect to an extent with their stories, but when it comes to sharing my own experiences it’s just not the same. I often don’t know how to connect and it makes it difficult to get to know me for who I am, as an average person, just coming from a completely different perspective and a totally different life experience. It impacts everything and there is no way around it. I often feel left out of conversations because I am unable to talk about or understand things that are so commonplace for most people, yet they are also unable to relate to the things that are so commonplace for me. As much as I strive to maintain normal conversation and limit my health experiences, it is such a big part of my life and a huge part of who I have become, what I am passionate about, why I do the things I do and say the things I do, and why my lifestyle is as it is that I don’t know how to get around it. I certainly can’t go back and change those circumstances in order to achieve a better sense of normalcy, and there’s nothing I can do now to escape the realities of what I deal with on a daily basis and the limitations I still have. I often find myself desperately trying to dig up stories of times when some event in my life happened that was within the realms of normal...a college memory, an internship experience, or a G-PACT issue that puts me in the career path in a sense, but unfortunately most experiences are still tainted by the 15 years that my life has been so wrapped in the medical world. I can’t separate them. No matter how hard I try, I can’t. It’s all part of me and who I have become. Yet, for some reason, many people tend to think that I should be able to separate the two. It’s only natural for my jokes, comments, and conversations to somehow involve that aspect of my life because it has such a profound influence on everything that I do.
Not too many people my age understand the feeling of losing very close friends, most of whom have shared the same experiences as I have. It’s a scary feeling to watch as some of my closest friends who fought so hard with me continue to struggle, and in many cases, lose the battle. Over the past year, I have dealt with the loss of several very close friends due to transplant related complications. I have attended memorial services for other friends in years previous as well. Although I am personally doing well in comparison, no one but those who have been through the transplant process can understand the fears that I have and how I must manage those fears and frustrations on a daily basis. Although I am very optimistic and see my future as bright and fulfilling, I can’t help but deal with strong emotions when any situation goes awry in my life or that of my transplanted friends. I don’t dwell on these things by any means. I make every attempt to avoid looking to the past as much as possible, but I certainly can’t separate them from my life.
Having a transplant changed things for me. I see this life as separate and completely different from my previous one, yet they are still connected. I have different issues I must battle and the entire transplant process has brought me to a greater understanding of myself, God, love, my family, friends, overall suffering, and the incredible need to fight regardless of the odds and discomfort involved. However, pre-transplant complications led to the need for a transplant and it’s all part of the big picture. I often feel as if I am ten years behind my peers in many ways because I am unable to talk about regular life issues beyond my college experiences. Sometimes I feel as if this makes me immature, but then I recognize that I am far from it. I may not be able to relate on levels that society places in front of me as a way of measuring maturity…the expectations of supporting myself financially, being totally independent, and caring for a family, my maturity is far higher in other levels of life and understanding and certainly my lack of independence is not related to anything in which I have any control.
I know how to handle complex challenges and decisions that others my age have never even considered. I’ve had to write an advance directive, a clear indication that I recognize my mortality at any time. I’ve had to push through pain, near fatal infections, cardiac arrests, surgeries, the inability to eat, living without a small bowel for a year, and the fight back from a 16 ½ hour five organ transplant and its complications just to achieve the measure of health that I have today. I have had to learn how to manage all the emotions, frustrations, and fears that come with the whole process and dealing with much of it without the full understanding of those around me. My battle with that continues as I do suffer the effects of some PTSD as a result of some of the medication problems I experienced post-transplant that left me unable to sleep, speak at times, think, remember, control, or care for myself. I was terrified, and what added to the trauma of this was the inability to express myself during that time and describe what I was experiencing to those who were trying to care for me. In spite of that, I have been able to overcome most of those memories and advance my life forward in an effort to focus on the future. While I am still haunted by those experiences, I have figured out how to cope when the emotions and fears hit and now I am able to lessen the impact they play in my life. These experiences have given me wisdom beyond my age as I am able to understand the challenges that come with managing not only physical problems, but the associated emotional, psychological, and spiritual challenges that so many people with chronic or life-threatening illnesses face. This has greatly enhanced my ability to work with the population in which I do. Although effective as a leader and role-model in G-PACT before, my effectiveness has been greatly enhanced by my experiences and my drive to fight for others has become even stronger. I don’t get paid for what I do in monetary terms, but I am paid every day that I am able to make an impact on the life of someone who is struggling and in need of knowing there are people out there who truly care and are fighting for them. My value as a human is not based on how much I earn, but how much of a difference I make in the lives of those around me.
Battling what I have and dealing with a future of unknowns never gets easier. It never will. I recognize that many of the medications I take and treatments I go through have consequences years down the road as well. It’s difficult at times to know that what is keeping me alive at this point may eventually lead to further complications. But I don’t let that rule my thinking or way of life. I can’t. Somewhere there is a family whose child died during an unexpected, catastrophic event and made the decision to give life to someone else during a time of mourning. I can’t let that family down. I have always felt it is my obligation to do what it takes to make that family proud to have given this gift and to see how their child has made an impact on the world.
The things that make my life so difficult are also the things that make me so passionate about life. Often, people do not understand why the littlest things are so exciting to me…an hour in the Jeep with the top off, spending a couple of hours with a friend, volunteer work doing anything for even an hour or two, and the need to cheer people up through any means I can think of, even if as simple as sending an online greeting card or a superpoke through Facebook! I enjoy meeting people whether online or in person and just getting to know them. It means the world to me to go out with anyone at all to eat or just hang out and chat. The ability to travel and represent G-PACT is exciting because I was unable to do that for years. I love being able to represent thousands of people who are unable to represent themselves. I enjoy things in life that many people dread or try to avoid. Even things I don’t enjoy I often find that I don’t mind doing because I have the capacity to do them…I am alive to do them. There are so many things I want to learn now that I never had an interest in before. I want to travel to so many places! I love life and am grateful for every day that I wake up!
Although it is trying to know that in spite of my efforts to the contrary, I will never be seen as “normal”, I recognize that I have been chosen for a reason to take on this task. My love and passion for God has grown and because I am unable to completely step out of my world and reality, it has given me many opportunities to share how the Great Physician has intervened in my life and given me more chances in life to serve Him. My story has encouraged others who continue to fight that there is hope as they have watched me come from the brink of death, unable to get out of bed, and not expected to live through the transplant, to someone who has recovered and found a way to fight back in a way that helps not only me in my attempts at coping and recovery, but all of them as well.
I recognize that not only do I owe it to my donor family to utilize every opportunity I am given and seek out others that become available, but I also owe it to my God who has clearly kept me in this world for a time because of some great purpose He has. Although His purpose is not always clear and my world is certainly filled with questions, frustration, and an ongoing struggle with inner thoughts, feelings, and fears, I know there is a purpose and it’s not in the future. It is something I am working towards fulfilling every day. So while I continue on in this constant battle of ups and downs, facing the unknown, and maneuvering within the unique and misunderstood world in which I live, I try to maintain perspective and recognize that I am not to be defined by what society deems as normal, but that God has given me a special environment in which to live and operate and a particular focus and gift in life that only those with my circumstances are given. When feeling frustrated by the inability to live up to society’s “norms” and not feeling fully connected with the typical world, I force myself to focus on how the world that I live in would be different if God had not given me the opportunity and abilities to work within it and make an impact in any way possible."
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.