The following essay was submitted by Kevin Savino-Riker as part of the Share Your Story project.
To view more projects submitted by Kevin, click here.
I’m sorta cheating on this project.
I don’t know anybody who suffers from Lupus. That’s to be expected, I guess, with a disease so rare. That it gets any acknowledgement at all is surely due to its severity as an illness. What little I know of it is horrific.
So what, then, am I writing about here? Despite not being directly affected by Lupus, I have a very personal experience with Lyme Disease. While largely treatable and curable as long as it’s caught early, Lyme can ravage a body if it remains undiagnosed like it did with my mother for twelve years. The way it attacks can be quite similar to Lupus; they’re often misdiagnosed as each other, or as any of a hundred other unrelated illnesses.
So the hardships my mother endured over the last twenty years qualify me to empathize, at least a little bit, with those who suffer from Lupus. They each still have their distinctions and I don’t mean to imply too much; there are plenty of minor cases of Lyme and I don’t want anyone to think I’m downplaying the tragedy that Lupus is… every time.
So from this point on, I’ll speak on the common ground between the two.
There’s really only one thing for me to say – I hate, hate, hate these diseases. My mother was one of the most active people you’d ever meet. Between hang-gliding, wind surfing, riding dirtbikes and mountain climbing, she had her share of injuries… but moreso she had a collected wealth of experience and love of life that rivaled that of everyone else I ever met. And people healed from injuries, so why stop? She never would unless something else stopped her. In this instance, it was a rash she went to the doctor to check out, and had she worn a t-shirt and jeans to the doctor instead of the pantsuit she chose, maybe he wouldn’t have summarily excluded a likely diagnosis because of assumptions about her lifestyle.
There wasn’t much literature on the disease at the time, and people in and out of the medical profession did their part to propagate many misconceptions that made these diseases exceptionally hard to diagnose. I remember the day my mom came back from a specialist with tears in her eyes, ready to share the bad news with us that all the odd pains and debilitations she started experiencing were caused by the onset of multiple sclerosis. She didn’t lament her predicament (though we would all later lament its gross inaccuracy and the resulting delay in treatment it would cause her) but instead spoke of relief for finally knowing what was causing all this pain and confusion.
That’s what really hit me. My mom had always been a hero of mine for being such a good friend and mentor, but her own bravery was shown in vivid detail with the way she carried herself while living with her illness. Never once did she lose her spirited and upbeat demeanor. When it mangled her vocabulary and clouded her memory, she told jokes she did remember. When it took her legs, she costumed her wheelchair as a dinner table that year for Halloween. She became my hero all over again for that unrelenting daily optimism, and it broke my heart that she was enduring unspeakable pain every single day. The only gift I could think to give her was reprieve from her constant positivity. Give her a chance to be vulnerable and weak around me. Stop expending that extra effort when she was already so compromised. Let her cry if she needed to. It’s a fucked up world when the best thing you can think to do for someone is watch them suffer. And despite her comfort with me and appreciation that I was constantly telling her that whatever guard she had up, she could let it down, she still refused.
“Being sad doesn’t do you or me any good,” she’d say, “being happy always feels better anyway, so why stop?” She had the nerve to be concerned about me first. I cursed the world for doing this to such a beautiful person. There was nothing fair about it. It was the opposite of fair that her incredible nature and character had to be revealed in full through such a terrible predicament.
The happy ending is that the specialists she eventually found fought her illness tirelessly. Within five years of extensive therapy and a medicinal regimen that compromised what healthy parts of her body she still had, she had been granted an almost full reversal of her physical condition… in no small part, I’m sure, by her own will to recover. She went from the wheelchair to crutches. From the crutches back into the wheelchair. From the wheelchair to sneakers. And today, she still straps on her inline skates and jaunts around the neighborhood for exercise. Her cognitive dysfunctions still persist at times, and she still suffers from chronic nerve pain, but she’s well enough to move on her own again. She was lucky, and determined. You need both to survive something like this. But the most important part is, by far, the determination and attitude. They always say the worst things happen to the best people; I think it’s more that the best people are revealed by the way they handle those terrible things.
And those things will keep happening. And people will be handling them for a long time. We are, however, getting progressively better as a society at being able to inform the public about these diseases. We’re making it easier for people to learn about their conditions more quickly and more reliably. And we’re getting better at putting people together who can benefit from each others’ support. It’s not nearly enough, but it’s a start.
To anyone in need of that support, I offer you what little I can in the form of sympathetic understanding, and hopefully a couple encouraging words: I’ve seen a miracle take place in front of me. Our bodies listen to our words and our thoughts, and they believe what we believe. All you have to do is reach out to those around you, and please…. please believe that you’re going to be the one that’ll beat the odds. If you do that, I promise your body will do everything in its power to prove you right.