amber

The past twenty-four years have been an amazing journey. I grew up in a small town in the Willamette Valley on a farm with horses, goats and chickens, went to school in a little red school house with 80 people, K-5, and played sports on co-ed squads because there were never enough girls for a team. My family was always close, finding any excuse to get together, no matter how far some had to travel. Throughout my childhood I experienced many enriching environments and was always raised to be cultured, try new things, meet intriguing people, and eat eclectic foods. I have traveled to far off places such as England, France, Mexico, and the Caribbean. I have moved across the country from Oregon to Maine, and then down to Boston, where I met my sweetheart and better half, Steve. Throughout this passage I have made the most incredible friends, some of which have moved on and others have stayed in contact, but all have remained within my heart. I graduated college with a Bachelors degree in Nutrition, and used my compassion for children to earn an income. As a nanny I am around children daily, often several at once, sharing experiences of first steps, theater musicals, soccer games, and giving advice I often found my mother telling me at that age.

Throughout this journey I never asked my self why me? Why was I chosen to have Cystic Fibrosis? I always accepted the disease as part of who I am. As a child I didn’t manifest many symptoms of the illness. I knew very few people with the ailment, so I had no idea of its progression. I quickly learned as I grew older. By the age of fifteen I had become used to all the medications, physical therapy, doctors appointments, and frequent hospitalizations. The adolescent years were the toughest, however. On top of trying to fit in at school, maintaining good grades, playing sports, and sustaining a social life I tried to keep my disease hidden from my peers, not wanting to be “different.” This was often a difficult task since I was hospitalized on several occasions, for weeks at a time. By the time college came around I became direct and straightforward with my issues, informing classmates and professors of the etiology and progression of CF. Everyone was always very supportive and nonjudgmental. Today I continue my battle with CF. Over the past few years my lung function has decreased dramatically, affecting my everyday life. The alternative for the shortness of breath, chronic cough, constant fatigue, and decrease in body weight is a double lung transplant. Although this isn’t the cure to Cystic Fibrosis we would all like to hear, it is an opportunity to live a longer and healthier life.

Life is a roller coaster; it has its ups and downs

Amber, 2001