Cancer is one of the most inescapable realities of life. Eventually, you’re going to either know someone with cancer or be someone with cancer – sometimes it will be both. My high school biology teacher announced happily one day – if you live long enough, you’ll get cancer. He was a socially awkward human but I really enjoyed him and his classes. He taught chemistry too.
My grandfather had cancer at a time when cancer treatments were few, and in a developing country no less. His outcome was wretched – I remember my mother describing his bravery throughout the ordeal – but the pain was unrelenting, as was the cancer. He died shortly after diagnosis.
I’ve had other people in my life diagnosed with this horrible disease. Some are survivors, and others are not. They all reside in the memory of my heart and I think of them and pray for them all – those here with us and those who are gone.
But cancer isn’t the only disease or condition that afflicts humankind. And as a caregiver to someone who does not have cancer, it is so difficult to find the right words to describe the monster that lives with us.
Caring for someone with MS is a lot like being a hamster on a wheel. Until you get the hang of it, you’re always going to run out of steam and get thrown off course.
No…that’s not it.
Caring for someone with MS is a lot like being on the show The Bachelor. There are many people and personalities in and out of your life – some helpful, some not. And someone usually ends up crying.
Caring for someone with MS is a lot like being a football athlete in soccer gear. You’re not wearing enough padding and things are about to get physical.
Get your mind out of the gutter, but pretty accurate.
My frustration isn’t with the people who had, have, or will have cancer – they have my prayers and my goodwill. My frustration has everything to do with me not being able to give the same kind of credence to “it’s MS” with the words I have in my wheelhouse.
People caring for those with diseases rarer than cancer all have this same challenge. “How do I make them understand that this is serious – like cancer – but it’s not cancer.”
Interestingly, cancer itself is so varied that even describing a disease in comparison to cancer is too hard because cancer is actually what I would dub an umbrella term for a bunch of terrible, but not all the same, conditions. Cancer used to be this big scary monster that meant certain death. It doesn’t always mean that now. Sometimes, it’s a big scary monster that you slay. Sometimes it’s a big scary monster that stays with you for many years – kind of like MS. But I doubt anyone would make this comparison, because not enough is known about MS in the public sphere, and what is known are just generalities.
The variety of symptoms in MS is endless. It’s sad and daunting. And it can change for patients from year-to-year, month-to-month, week-to-week, and (yes – this is hard to believe) day-to-day.
I’m definitely not making any sense to anyone reading this who isn’t a caregiver.
For my caregiver friends – I feel your pain if you’re having challenges in helping others to understand the seriousness of your situation.
If you want to learn more about MS, I love this video. It’s short, easy to watch, and in language that most people can understand.