In a thread on Patients Like Me, a very loving caregiver, wrote, “I do understand what my children and friends go through on every level.” While I desperately appreciate her passion, I disagree.
My husband, Adam, who I admittedly would not want to live without, and I had a talk about this just the other day. We cannot know what we go through — and that’s part of our natural paradigm. He is the Yang to my Yin.
As my caregiver, he has to watch me suffer, knowing he cannot take it away, but doing all he can to keep me safe and happy.
I, on the other hand, have no choice in my disease but to suffer and watch him, sad for my suffering. Clearly, I’d take it away, and yet I must still strive to find happiness, to be loving to him and to others, and not to blame myself for the things we cannot do because of the limitations placed upon us by the disease.
He must be cheerful despite the profound sadness of the situation, working doubly hard as a husband, doing all the driving for the chores, chopping the vegetables with the sharp knife (that was before I got my kevlar gloves. I ❤ my kevlar gloves!) whenever we cook, doing whatever extra is needed.
And me… control freak that I am… I have to be okay with it. I have to let someone take care of me. Like a child sometimes. At the age of 30.
So when she says, " I do understand what my children and friends go through on every level. "
She's both right and wrong. Caregivers are the rest of us.
They may not feel physically what it’s like to have Epilepsy or Seizure Disorder, but they absorb and feel its effects 24/7. There is a significant mental and emotional component that caregivers lovingly and willingly take on. In that way, caregivers have Epilepsy and Seizure Disorder (or in my & Adam’s case MS & Seizure Disorder) in their lives just as much as the person who physically has it.
Caregivers have an understanding of our disorder that we don’t because there’s an objectivity that we lack. It comes with the gig. There’s a lot they learn about us and how to take care of us while we’re unconscious or seizing or post ictal. These are the folks who come with us to our doctor’s appointments and remember what was said. They help us keep up with our papers. They are the ones who help you up every time you fall.
That’s why we’ve really got to give them love. We can’t take them for granted.
Adam is constantly awesome. He rocks my socks off in too many ways to name. Honestly. 🙂 From cooking meals all the time to taking the trash out to being an awesome kitten foster dad and a kickass screenwriter, I couldn’t ask for a better husband. 🙂 He actually griped at me to sit down this morning when I was cleaning because I wasn’t feeling good.
If there’s a special caregiver in your life, let us know about ’em!
If you’re a caregiver, please know, we appreciate you!!!!