Wouldn’t it be great if everybody could experience The Best Things in Life all the time? In a world of unicorns, rainbows and free wine that might be true. But the reality is that we don’t live in that world. Our world is much harsher than that. In fact, the best things in life can be taken away from us in the blink of an eye.
I first met Jane at the local rec centre when our girls were babies. I knew I would always remember her name because my mom’s name is Jane and my daughter’s middle name is Jane. Also Jane is from England. Ipswich to be more specific. Another reason to remember her is that my granny lived near Ipswich. We stayed in touch through mutual friends, sports and eventually school as our girls grew up. Our daughters both love soccer and ended up on the same team and in the same Kindergarten class. Jane was active and I often ran into her with her kids on the local trails or at the park. Then her life changed.
Three years ago this month Jane was experiencing the life of a normal mother, wife and Software Program Director. It wasn’t a particularly stressful day and things were pretty quiet at the office, but she just couldn’t shake the feeling of being a bit “off”. Sitting at her desk, she remembers wheeling over to a co-worker in her desk chair and telling her that she didn’t feel right and wasn’t sure what to do. “You don’t look very good. You should lie down” they told her. That’s the last thing she remembers. She had a massive seizure and lost consciousness. The EMTs came and she was taken to the hospital in and out of consciousness. After eight hours they couldn’t tell her anything about her condition so her husband came to pick her up. All she can remember is thinking that they were driving home from the hospital with their newborn son who was in fact, already two years old.
Eight months went by as doctor after doctor tried to figure out what had happened. She was told not to work and her days were spent at hospitals and doctors offices hooked up to machines as they flashed light in her eyes, taped her eyes shut and tracked her brain activity. One doctor even told her that it was a just a tension headache and she should try Tylenol. “Really? I lost the feeling in my left arm. I think it’s a bit more than a headache” She endured rounds of heavy duty drugs. One round she discovered was LSD based and caused an alarmingly bad trip. At least she can tick that of her list of things never to do again. After that, they put her on amphetamines to improve her brain function. The drugs left her hazy, tired and well, drugged.
After a recommendation from somebody on-line, Jane requested neuropsychological testing. The result. A diagnosis of encephalitis. Because a spinal tap was not done when her first seizure happened, they can not say of it was viral or bacterial. Regardless, the prognosis was not good. Permanent brain damage showed up in an MRI. The list of things she can no longer (ever) do is long. When the doctor told her she would never work again she was shocked, but what really hit her hard was when he told her that she would never snowboard or ski again. For an active, outdoorsy person this was devastating.
As the question came out of my mouth I realized how stupid it was. But I asked it anyway. “Has there been any upside?” No, there is no upside to brain damage. She often has to check a book out of the library multiple times as she forgets she’s read it or even what it is about. If she stay up late to bake for her kids school carnival she needs to take it easy for a few days afterwards to ward off more seizures. She dreams in German. She hasn’t given up gluten because it’s trendy. She’s done it because gluten is a known neurotoxin and increases the probability of seizures. She is judged. She doesn’t look sick but it is often a struggle to walk the few blocks to school to pick up her kids. She can’t count backwards.
She tries not to think about the future because she just doesn’t know what it holds and that in itself is very scary. She does feel that she is a better mother and wife than before. She literally can only focus on one thing at a time so if she is with her kids they have her complete attention. How many if us can always say that? Her husband has been so helpful and patient with her and for that she is eternally grateful. Their relationship is probably even stronger now that they can spend more time together. She has discovered pottery can be very therapeutic and has produced some beautiful pieces.
What struck me the most as I walked home from our chat at the local juice bar was Jane’s sense of empathy for anybody else experiencing difficulty in their life. She’s not bitter, or angry or resentful at all. I can’t say that I would be the same given her condition. I can’t help but admire her ability to go on with life on a day to day basis. “I don’t have an option”. She says as I tell her I think she’s doing great. And she’s right. She is making the best of a really crappy situation. I know it’s cliché, but if our chat reinforced anything it is to enjoy The Best Things in Life every day because you just can’t predict what may happen tomorrow.