I don’t know if I would have been so strong.
Imagine at the age of 13 starting to feel so sick that you couldn’t keep food down any more and continuing to go to school while losing weight so rapidly the rumours spread like wildfire. Improperly labeled a bulimic or anorexic and told by doctors your sickness is “all in your head,” could you continue to hold your head high?
Yelled at by strangers on the street who say, “why don’t you just eat something,” and desperately wanting to do just that, while peers jeer and poke fun at your fragile frame, could you force a smile?
Eventually unable to even keep stomach acid down and visiting dozens of doctors, undergoing test after test with pokes and prods to find no reason for your suffering, could you find a reason to get out of bed?
Eventually having a stomach stimulator put in and then messing with the settings for two years while still throwing up and getting thinner and sicker, frailer and weaker, and then needing to have the stimulator removed because it wouldn’t work for you, would you want to give up?
Losing all your teeth from the acid thrown up daily and ultimately having your stomach removed with much pain and expense, only to find some symptoms still persist, what would you do?
I’d like to think I’d do what Rose Schwarz and her family do — fight and investigate and never give up — but I don’t know if I could stay strong for so long.
I think the key is support. Rose has the steadfast support of her mother Tani, who has spent thousands of hours researching possible causes when no one else would, and her stepfather Gary, who has led many a fundraiser. Time and time again the community has also rallied behind the family of fighters who cling to the hope of better days ahead.
Rose has been suffering for 12 years with mysterious symptoms of what the family now know is Lyme disease, likely transferred through a tick bite when she was just 13 years old.
Now at 25 (she turns 26 in June) Rose weighs just 74 pounds and is in constant pain with headaches that need narcotics just to take the edge off. Yet she’s somehow finding the strength to get ready for a new fight to tackle what’s really been hurting her all these years.
I know the community’s outpouring of love and financial aid to Rose and her family is helping strengthen them during this difficult time.
Not a family to sit in sorrow, Rose, Tani and Gary are looking towards the future with positivity.
“At least we know what we’re fighting now,” the family told me this week, noting they plan to educate others about the simple bug bite that can cause such sickness.
Tani is already getting the word out through The Continuing Fight to Save Rose Facebook page and FundRazr site, and she’s happy to share information she’s found about Lyme disease with anyone who contacts her.
For diagnosis, she’s pointing people to the Western Blot test she had done for Rose in the U.S., which is a much more accurate test than what’s available in Canada.
“I bet there are lots of people suffering with Lyme disease that don’t know it because there’s not much knowledge about it here in Canada,” Tani said.
Elizabeth May of the Green Party is also trying to pass Bill C-442 (currently at second reading) to get the Minister of Health to “convene a conference” to develop “a national strategy to address the challenges of the recognition and timely diagnosis and treatment of Lyme disease” in Canada.
Rose and her family are hopeful the bill will make its way into law, so others can be saved from years of suffering.
