My sister and I wrote a story on Stephen for a book focusing on autoimmune disease stories and just got it submitted. I wanted to share it for anyone who knew Stephen or wants to know more about our amazing big brother. Check it out below: I still remember the day we realized Steve had a serious problem with his physical health. Our family had just finished moving all of our belongings down from Tennessee to Florida after our father’s job transferred us to Orlando. Being the only other man in the family, Steve helped in moving all of the heavy items off the truck. His legs were too weak to continue after just a few boxes, and he needed a break. He was never a lazy person, always driven and tough, so to see him worn out that quickly was concerning to us all. He was 17 years old. Steve went to a family doctor for some answers. Initially, he was told his shoes were the issue and he was sent home with a prescription to find a better pair. Our mother, who knew this was more serious than a sneaker problem, insisted on finding out more. The doctor finally ordered some tests, and it was immediately discovered that Stephen had a very high white blood cell count. Although it is very rare, the family physician was able to recognize it right away – he diagnosed it as the autoimmune disease Polymyositis. Steve was referred to a Rheumatologist, who completed a muscle biopsy and confirmed the diagnosis. Shortly after, he was prescribed Prednisone to bring his white blood cell count down to a normal number. He would remain on this medication for several years. Over the next 10 years, Stephen had many ups and downs with Polymyositis. At one point, he was placed on a weekly dose of Methotrexate to try and control the progression of the disease. Unfortunately, it had some extremely strong side effects on top of the symptoms of the Poly, like weakness and nausea. But he never let his physical ailments get in the way of his enjoyment of life. He never even let his friends know there was anything wrong. He didn’t want pity or attention for his illness. He just wanted to lead a regular, normal life. And he did, ignoring those that judged him when he struggled to get out of a car, looked at him differently for needing a cane in his twenties, or said hurtful things because they simply didn’t understand. What he, and everyone else, probably didn’t realize then was how, even though he had plenty of reasons to sit back and give excuses for why he can’t or won’t try hard, he always gave everything his all. He was the nicest, strongest (inside and out), most generous person I have ever known. As for our family, we often forgot he actually had it. It never defined him or the life he lead. Once he graduated high school, Stephen tried to pursue his dream of joining the Navy, as our father had, to serve the country he loved. Because of his disability, he was unable to join and instead went to a technical school and graduated with a degree in auto mechanics, another love of his. After a few years of working at a dealership, he was physically incapable of consistently climbing in and out and under cars, so instead of wasting his time being depressed about it, he tried something else. He decided to return to school and began substitute teaching. With an incredible passion for history, he also started participating in Civil War re-enactments. Those were some of the best times of his life. He travelled around the Southeast with other re-enactors, living like the soldiers in tents, wearing full uniforms and eating around campfires. During the day, huge crowds would gather to watch dozens of Confederate and Union soldiers recreate famous battles. There were times that it was hard for him as the major symptoms of Poly are muscle weakness and shortness of breath, so being in the sun and on his feet all day was challenging. When it got to be too much, he would just fall down after “being shot” and “die” for a while to rest. He loved every second of it. Eventually he enrolled at the University of Central Florida for his bachelor’s with the goal to become a history teacher. In 2010, the Polymyositis began flaring up more than before and Stephens body grew weaker. He and I both were in the midst of planning our weddings; his to be 2 months after mine. This was the only time he ever admitted that he was afraid of what was going on with his body. He had reached a point where, just sitting on his bed, he could not lift his legs on his own. He was unable to stand without great effort and often some assistance, so for the most part he would lean on the wall rather than sit down out of fear he would not be able to stand back up. He had been with the same Rheumatologist since his diagnosis, but no medical changes were made despite Stephen’s worsening symptoms. He decided to see another doctor for a new opinion. After a few visits, a muscle biopsy of his thigh revealed that his legs had atrophied. The new doctor suggested that he visit the Mayo Clinic in Jacksonville, Florida - about a 2-hour drive from home - to see a very experienced Rheumatologist who had several years working with Polymyositis patients. The hope was that Steve could participate in an experimental treatment called Rituxan. He was able to have his first treatment at the Mayo clinic, but before he could return for a second treatment his condition worsened even further. He was now hardly able to stand at all. Our parents purchased a few things for his new home to assist him, including a recliner with a motor that pushed him up into a standing position and a toilet seat attachment with handles. Eventually he began struggling with loss of bowel control. In August of 2010, he caught a severe case of the flu which caused him to be hospitalized for a few days. He was discharged and sent home with some medication, but his condition still continued to worsen. A few days before my wedding in September, Stephen was re-admitted to the hospital. He aspirated some fluid into his lungs, causing him to be placed in a drug induced coma and onto a ventilator. While I got married, my brother lay in ICU at the local hospital. When I visited him just after as he awoke, he expressed so much guilt for missing my special day. That just shows what a kind-hearted person he truly was. Rather than pitying himself for his condition and being in the hospital, not even able to speak with a tube down his throat, he felt sorry for not being there for me. Over the next few weeks, he remained at the Orlando hospital moving in and out of ICU. He caught pneumonia and remained on the ventilator for several weeks. The hospital didnt know how to handle Polymyositis. Most of his doctors had never even heard of the disease, and there was no Rheumatologist on staff to treat him. We pushed for his transfer to the Mayo Clinic where we knew they were better equipped to help him. We contacted them constantly, but there were no beds available in the ICU. We waited nearly 3 weeks before he was transferred via helicopter to the place he could finally start getting better. He didn’t even remember the trip, being unconscious and at one of the worst points with the disease. Stephen slowly improved at Mayo, receiving Rituxan & IVIG treatments, physical therapy and direct care from a Rheumatologist. He was transferred back to Orlando after 2 ½ months when the doctors felt he was well enough to be placed in a rehab facility. He lost so much weight in the hospital and attended rigorous physical therapy to gain the strength to lift his legs off the bed again, but he remained incredibly positive the entire time. He worked so hard with breathing exercises and eventually was pulled of the ventilator, allowing his tracheotomy hole to heal leaving a small scar behind. We were so excited to see him improve. He had more ups and downs while recovering over the next few months. He returned to the Orlando hospital after his body weakened so much that he caught sepsis, and again was placed in a drug induced coma. Thankfully, he was able to pull through and recovered fairly well from it. He sent out an e-mail update to the family a few days after he woke up and said, I WILL NEVER GIVE UP!!!! This was him not allowing a disease to decide his outlook on life. He pulled his strength from within and placed all his energy in focusing on getting out, getting home, and getting married. He rescheduled his wedding several times, never cancelling completely because he would not – and did not – let a “little setback” get in the way of what he wanted more than anything. One thing you would know shortly after meeting Stephen was his absolute passion for and pure appreciation of food. Our parents always joked that he could tell you how to get anywhere just by using restaurant landmarks. He loved trying new foods, to have food cooked for him, eating out - every meal was important to him. But truthfully, I never met anyone that enjoyed a hamburger more than he did. We could have an entire conversation about where to find a decent, good or great burger within a 5 mile radius. Unfortunately, he was forced to miss many meals and had a very difficult time with it. Beginning in mid-2010, he spent a total of 7 months in the hospital. The majority of this time he was on a liquid diet, and for a portion of it he had a tube inserted directly into his stomach to receive his nutrients. I was with him the day they placed him on solid food again. I will never forget how delighted he was to have a hamburger in his hands. It had been so long since he had any food in his mouth, and for his first meal to be his favorite thing was exciting for him. And for us, because this marked a turning point in his recovery. Sitting in the tiny crowded hospital room with Stephen, our parents, and Steves fiancée, we laughed and remarked how great he looked and how much progress he had made. It was so relieving to look ahead and see better days coming. Stephen was sedated shortly after to remove the stomach tube, at which point he aspirated again. This would be the 6th time over the months. Even though the doctor had given the OK, he wasn’t ready for solid food. He immediately was placed back on a ventilator and into another drug induced coma, which we were told would both be temporary. A month passed with Stephen only waking occasionally. When he opened his eyes I would smile for him just so that he knew we were there and happy to see him. But as the weeks passed his condition worsened, and eventually he caught another bout of pneumonia. His breathing became so rapid and his lungs so weak that he was placed on an oscillator, which is a ventilator that keeps the lungs expanded. He was on so many IV medications and machines surrounding his hospital bed, it was difficult for more than two of us to be in the room at the same time. We contacted the doctors at Mayo clinic again, who sent another dose of the Rituxan treatment. But it was too late. His body had fought so hard for so long, but the disease and everything that came after was too much. Stephens body was giving up. He was too weak to fight anymore. We would later learn that the Polymyositis had seriously affected the muscles of his stomach, which caused him to repeatedly aspirate. Because no one understood the disease and Rheumatologists are not readily available in hospitals, the same mistake was made over and over again, eventually scarring his lungs beyond repair. Unfortunately, at just 29 years old, he did not get to go back to his house, his own bed, his small family with his fiancée and beloved cat. All through the time Stephen struggled with Polymyositis, beginning with his diagnosis and through his battle from a hospital bed, he kept a brave face and never complained even though he had every right to. Knowing everything I do now about this disease, I find it so shocking that he was able to handle so much without a word. Looking back, we didn’t even realize how hard it had to have been for him because we saw his strength and not his weakness. He fought hard to the very end, and I will forever live my life with the strength I gained from him.
Posted on: Sat, 26 Oct 2013 20:45:00 +0000
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