Usually, my blogs are written for people who have Myasthenia Gravis, but today I want to reach out to our family and friends.
What you do for us is amazing. You’re our Support Squad. You do so much to remind us that we’re not in this alone. You listen to us, you counsel us, you watch over us. You do things for us that we’re unable to do for ourselves. You remind us when we’re doing too much. You make sure we’re taking our medicines as directed. You run errands for us. You’re there for us, physically and emotionally, when we need you the most.
Thank you for all you do for us.
At the same time, I ask that you challenge us. Don’t let us get lazy or overly dependent upon you or anyone else. Don’t allow us to wallow in a pity party for too long. Don’t allow us to let MG control us instead of us controlling MG. Don’t let us interfere with your life to the point that you’re unable to take care of the things that are important to you and your family.
It’s okay to tell us “NO”. It’s okay to not be able to drop everything and rush over to sit with us. It’s okay if you’re busy. It’s okay to not put your life on hold for ours.
We can be impulsive. We can be demanding. We can be emotional. We can make ourselves appear helpless. Those are all things “We” need to deal with, not you. You get to choose when you want to be involved.
We can become angry. We can be self-centered. We can be mad at the world. Those aren’t your responsibilities. We own those things and you don’t need to tolerate our bad behavior.
There’s one thing, however, that we need from you more than anything else…. Don’t ever let us give up.
That’s your job. That’s your assignment.
When we get to the point of throwing in the towel, snap us straight. Tell us to pull up our big boy/big girl pants and fight this thing. And if we don’t straighten up, then you do what you need to do, even if that means walking away.
It’s not easy to tell someone you love that you’re going to give up on them if they choose to give up on themselves, but that’s the message we need to hear. You’re not in this to watch us waste away. You’re not in this to do everything for us. You’re in this because you love us and want to help us and you can only help us if we’re willing to help ourselves.
It may sound mean. It may even sound cruel, but it’s not cruel. Cruel is when someone has the ability to fight and chooses not to. That’s being cruel to themselves and everyone else who loves them.
If we get to that point, give us the ultimatum. Make us prove our love for you by putting forth an effort, by putting up a good fight.
We call Myasthenia Gravis the “Snowflake Disease”. It can also be called the “Snowball Disease”. We can make things worse if we stop trying. Symptoms will worsen if we don’t take our medicines as directed. Our muscles will atrophy if we refuse to exercise them. Our mental acuity will deteriorate the moment we feel like giving up.
Don’t let us. Tell us you will be there for us as long as we are willing to put up a good fight, but you’re not about to watch us waste away because we refuse to do the things we’re supposed to do. That’s love.
Being overly compassionate and trying harder when we no longer try for ourselves doesn’t help us. Tough love, the kind of love you hope you never have to use, but the kind that is most important in a situation like this, is the love where you tell us you’ll try, but only if we try.
The day may come when we’re not thinking sensibly. Your tough love is what we’re going to need the most.