If you closed your eyes and listened to Rose Schwarz talk about the life she'd like to be living, you'd hear the exuberance and idealism of most any 20 year old. When you see Schwarz, it is difficult, at first, to hear about the dreams and goals she has for herself because her appearance is upsetting to take in. Schwarz is 5-5 and just 90-odd pounds.
"I'd love to eat a burger," Schwarz said emphatically, but she can't, literally. Schwarz cannot eat anything due to a disease called gastroparesis.
The disease is often misdiagnosed early on as an eating disorder such as anorexia nervosa or bulimia. Schwarz recalled one of many bouts with misdiagnosis: "I was sent for help for an eating disorder and when my family was gone they'd say, 'Your parents aren't here. You're not fooling me. You lose any more weight, and you're going to die.' I was scared out of my mind," she said.
Gastroparesis causes anorexia in the physical sense, but is due to a malfunctioning of the stomach muscle. Schwarz's stomach does not contract because the vegas nerve no longer works to signal her stomach to function. Food does not digest, leaving Schwarz nauseated and unable to gather any nutrient value from it. She has often spontaneously and without warning vomited undigested food hours after eating. "She was sitting at the computer with a garbage can next to her and every 10 minutes she'd throw up. I knew this wasn't normal and I knew it wasn't anorexia," Schwarz's mom Tani said.
When Schwarz was in Grade 10 she was a comfortable 130 pounds after working hard to lose weight through proper diet and exercise at Curves gym for women. She had once weighed 200 pounds. "I've been the fat girl, the Goth girl and the skinny girl. People think I'm a druggie or weirdo or something," Schwarz recalled with a laugh.Between February and June of Grade 10 she dropped to 115 pounds. From June to September she plummeted dangerously to 92 pounds. She required multiple hospitalizations because of fears her potassium levels were so low she would suffer heart failure.
At her lowest and before having a feeding tube inserted, Schwarz was 75 pounds. For the last couple of years she has been surviving on liquid vitamins by teaspoons at intervals and on sugar. They are the only two things her body is able to process.
Schwarz was misdiagnosed again with a physical ailment and yet doctors continued to make her take psychiatric assessments, sometimes refusing her discharge from hospital unless she agreed to one. She was given the wrong type of feeding tube that caused her excruciating pain and its removal has left scar tissue in her already compromised stomach.
Finally, and because Tani was studying for a medical transcriptionist course and came across an interesting term that raised red flags, Schwarz was diagnosed with gastroparesis. Tani, who said she has a "mini breakdown about once a month" said, "I told the doctors and they tested for it." Schwarz had to eat eggs with a low dose of radioisotope in them and using a gastric emptying scan, they were able to identify that her stomach was no longer functioning.
"It took so long and I had to keep swallowing the eggs down over and over," Schwarz remembered. The body eventually develops conditioned vomiting after months and years of the disease.
Schwarz's case is severe for her age. According to websites on gastroparesis, it is often mistaken as being acid reflux disease, indigestion and in extreme cases like Schwarz's, eating disorders.
The last hope Schwarz has before accepting another form of feeding tube for life is a surgery to install a pace maker in her body that will hopefully reawaken her stomach muscles and cause them to contract.
"Even if I get the lowest per cent [of stomach function], I'll be able to eat puréed soups and homemade juices and protein shakes and flaxseed oil," Schwarz said excitedly.
There is one doctor in Canada who performs the surgery; he is in Montreal. It is unclear whether health care will cover the surgery as the procedure is not approved in B.C. and none of the travel expenses are covered.
Schwarz and her mom Tani will spend at least one month in Montreal early this spring between hospital and a hotel. Schwarz has to be monitored closely to make sure her body accepts the pacemaker and the introduction of food that it hasn't processed in years.
Gary Gilbert, Schwarz's step-dad, has seen her and Tani through the last few years of uncertainty. That included being separated while Tani moved with Schwarz to Burnaby to be closer to doctors for a while and finally as the whole family moved to the Coast in April of this year.Gilbert has a son in Roberts Creek and has become quickly known in the community as a transit driver and musician. "Thanks to the generosity of the good folks at Pack Ratt Louie's, there are two or three nights of entertainment planned," he said to raise money for the family's medical expenses.
Schwarz is embarrassed to ask for help. "I'd like to be out there making her [Tani] proud, calling from a cool job. It's the ultimate bizarre situation," Schwarz shared. "I don't want to be known as a sick, fragile person. I'd like to make an impression based on who I am, not 'that sick girl'."
Schwarz was a straight A student in spite of being so ill. She missed most of her last two years of high school. She had to take easy courses instead of the maths and sciences she wanted to in order to go for a degree in forensic anthropology.
She is "obsessed" with everything to do with Japan and has hopes of travelling and living there one day. If all goes well with her surgery, Schwarz plans to work on the Coast for at least one year so she can save money to go back to school and will start to study the Japanese language. While she said she has moments of despair, Schwarz said, "At least this is happening to me when I'm still young and I can get better and on with my life."
She likened her experience to reading a bad novel, "I have to know what happens at the end. I can't give up because I just have to know. Even if I have a [miserable] life, I have to see what happens."
To help Schwarz, the Rose Fund is set up at Sunshine Coast Credit Union in Gibsons. The account number is 100556688.
