I entitle this My Time So Far with Scleroderma because this has been a journey unlike any I could ever imagine in my life. I would like to share some of my personal experiences over the past six years.
I have been married for twenty-six years to a very loving lady named Karolynne. We have two children who are both married, and two grandchildren of our eldest child and his wife. As for my service dog, Brandy, I will introduce her in good time.
I enlisted in the United States Navy in 1972, went into submarine duty, and spent my first hitch serving on what is called a Fast Attack submarine, which is a submarine without a missile platform. During that time I traveled over much of the Atlantic Ocean and even under the ice up north.
I left the service when my father died and stayed in the reserves for the next few years. During this time, I lived in my hometown of Mechanicsburg, Pennsylvania. Most people who are old enough might remember this famous town where the Three Mile Island Nuclear Power Plant incident occurred. I met Karolynne there and she was part of most of my teen years. She and I shared the same friends and most of the same activities. We married and started our family. I bring all this up as some people look for relationships between scleroderma and life experiences. I do not feel the exposure to the air or any potential steam leaks from the nuclear plant were contributing factors to my later diagnosed illness.
We decided, as a family, to re-enlist in the active Navy to finish my career. My career was filled with duty stations around the world on each kind of submarine, except the deep submergence project boats. Shore duty took me to the Indian Ocean, all over the United States, and to the outer reaches of the Alaskan Islands. My career was ended before I was ready, because my illness began to develop in mid-1990.
I was serving onboard a submarine in the Pacific Northwest, and the first symptoms were severe reflux and early temperature sensitivities. Naturally, being a healthy person, the doctors prescribed an antacid and told me to let go of some of the stress. I took antacid to the point where I had a bottle everywhere I went and just drank it as I needed, which was quite often. Finally, the doctor decided they needed to have a closer look at what was going on. The internist, who saw me at the time, stated that I had Barrett's esophagus with a hernia. I also had gallstones.
During 1994 and 1995, I had one surgery after another: polyps removed from my vocal chords; gallbladder removed; and a procedure called Nissen Fundoplication, where the stomach is moved around the esophagus to form an additional flap to keep the acid down. The doctors were amazed all this was going on simultaneously. They also discovered pleural thickening, restrictive in nature, in my lungs, and thickening of my bladder. These two years were difficult.
In the military, you were not supposed to be sick and if you were, you were considered broken. Many times, superior officers wanted me to leave the service because anything more than a broken bone or something they could not see made no sense to them, so they thought I must have been exaggerating the situation or dragging it out. The military leaders who praised my work for twenty years were turning against my career status. Karolynne and I were just holding on, trying to get through one new diagnosis at a time. Our children were simply lost wondering what was happening to their father. I decided to take as many medications as I needed and say I was feeling fine.
At this point, I took a position at a small Navy facility on the Indian Ocean called Diego Garcia. The job was demanding, but I was away from family, all home-life stress, and the time off work was always filled with warm weather, a warm-water lagoon on the island in which to swim, and Tosca, a new partner, became my best friend.By this time, my joints and hands were becoming more sensitive to the cold, the gastrointestinal problems were getting worse, and to top it all off, I was experiencing my first real bouts with fatigue. Tosca was a Royal Air Force drug detection dog. He and I had spent many hours checking all food and shipping containers, as well as flights that contained food for drugs or other contraband. Then Tosca developed a seizure condition that resulted in mandatory retirement. Tosca and I were in the same boat. I could not let the medical people know what was going on because it would land me back in the States and by this time, Tosca and I were quite close. He now lived in the barracks with me. I learned to chart his seizures, administer his medications, and properly exercise and care for him. The American Military chain of command wanted him destroyed, as he could no longer work. Even though Tosca had been given his rabies shots on the island, he could not return home to the UK, which is a rabies-free country. Somehow I knew this was the real attitude: If you no longer fit the needs of those who pull the strings, you were useless.
As my condition worsened, the pressure to have Tosca put down increased. To my advantage, this was a U.S. Navy facility, but this was a British-owned island and they had the upper hand. The British would not allow him to be destroyed. This fact is important because it was my first fight ? and Alamo! In fighting for what I believed, scleroderma cost me my career. An illness does not make me useless. I could see myself in what this wonderful four year- old Labrador was going through.
When my tour of duty on the island was over, and under the shelter of his status as a British working dog, I brought Tosca home with me halfway around the world. Once home, I could hide things no longer. I was tripping over my feet on tile floors, needed naps throughout the day, and I had my first main outward sign, a skin plaque that I could not hide from Karolynne. I had a biopsy and then my world started to change. I now had a doctor say the word scleroderma.
Wow, so much to learn, so much to do. Of course, I read all I could. I hit the libraries and the Internet, and that's why 1995 was a year I will never forget. I learned that doctors did not know much and that they did not agree much on what they did know. Researchers were not in agreement, so, of course, regular doctors did not know what to think. I was fortunate enough to find a family doctor who asked me what I wanted to do. I was confused and, to paraphrase, he said, ?We can fight the symptoms or we can study you for development like a lab rat.? He had treated several people during his tour in Japan and was familiar with treatment, testing procedures, and protocols. He was wonderful at helping me find information and learn to make decisions about my own care and treatment plan.Other doctors were fighting and changing the diagnosis, but they never left the word scleroderma out of the conversation. I had a doctor who was willing to be proactive. This doctor put a stop to my military chain of command's attempt to put me out. He helped me start my treatment and plan for a retirement with which I could feel comfortable. After serving twenty-three years, I did not deserve to be tossed aside like an old newspaper. I had earned the right to maintain my dignity and respect for a proper retirement. Thanks to this doctor, I was able to gain just that.
In October of 1996, I retired from the military. Then I learned the nightmare of dealing with the Veterans Administration and with Social Security Disability. I also learned this illness was not going to get better or just go away. With the help of some wonderful people, other patients, and my loving wife, we found a way to take one step at a time to work through this new system. I have since developed hypertension, pulmonary fibrosis, Sjogren's Syndrome, and an assortment of other natural progressions. I cannot stand the heat for it makes it harder to breathe and my skin itches like crazy. I cannot stand the cold, as my hands and feet will take on a new color scheme. I have learned that having esophageal dilation every now and then is not so bad; it actually keeps me swallowing with a fairly normal feeling. The twenty to thirty pills I take each day, everything from blood thinners to antidepressants, diuretics to blood pressure medications, are just part of my day. Pain seems to be a part of my day, but I am getting better at dealing with it and decreasing the pain medications, except on the worst of days.
Karolynne and I have learned that today is the most important day of our lives, and we have the future planned as best we can. Now we think of things like travel, friends, and spending time with each other, our kids, grandchildren, and, of course, our dogs.
I did lose my friend Tosca, but only in the physical sense. The lessons he helped me learn about life, such as finding the inner strength to stand up for what I believe and not compromising at the expense of my value system ? lessons like that are priceless. Many mornings after I wake from a short nap, all four of my dogs are on the bed all around me with my Brandy resting her head on my chest just looking up at me. They keep me safe and continue to show me the value of giving to others, understanding how important it is to never lose myself in the heat of the moment or in the middle of the battle. I have trained three dogs that are now fully qualified for service work. Karol and I are currently training two more wonder black Labradors.
Karol has retired from working for many years and raising our sons while I was gone to sea or other places around the world. Now we have time to share all the wonderful things this life has to offer. I am not sad or resentful of this illness or of the physical things I have experienced. Those are not important to me; they are but a small part of what this life has to offer. I am very thankful for the opportunity to learn who I really am. I know what my value system truly is; I believe in what I stand for. I?m thankful for the forty-seven years I have lived. I have lived them to the maximum. After all, many years ago, I never thought I would live past thirty, so now I am in bonus rounds.
I close with a favorite quote from a movie that has impacted my life for many years: "Live, live, live! Life is a banquet and most poor suckers are starving to death!?" I will never say, "If only."
New email: [email protected]
Old Email Prefix: mailto:dalfera
Don was founder and webmaster of Alf's Service Dogs, and a regular contributor to SD World email list.
Story posted 3-11-02
Story edited VH1: JTD 8-11-03
Email updated 04-19-10 SLE
Story Editor V1: Judith Devlin
Alf's Service Dogs
Social Security Disability
Voices of Scleroderma Volume 1
The story on this page is featured in the top-notch Voices of Scleroderma Volume 1 which features articles by top scleroderma experts, including Dr. Joseph Korn, as well as 100 true patient and caregiver stories from this website! The book delivers excellent information and support for scleroderma patients and caregivers. It's a great way to inform family and friends about scleroderma, too!
SCLERO.ORG was the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses from 1998 to 2021. It was a grassroots movement from the original Scleroderma from A to Z web site, which was founded by Shelley Ensz. We were a 501(c)(3) U.S.-based public charitable foundation. We closed this web site and our nonprofit agency in April 2021.