(June is National Myasthenia Gravis Awareness Month; this post originally appeared in 2011)
I found this in my e-mail this morning – it’s from a member of a discussion board that I’m on:
How do you cope?
Hello all! Hoping this post finds you strong and happy! I have been dealing with MG since March 6,2006, yet still wonder how exactly to COPE with it. All of us remember how strong we were, pre-MG. How we could take on anything (it felt at least)……..
I have very blessed in certain areas. My hubby still loves me. My family is healthy and happy. I am still a wreck. I know I should be grateful I’m still here with my family, but feel cheated, cheated by my body. Granted, I am much stronger now. I can walk, talk, breathe. I still miss the old me. I do know that a lot of us will go into remission. That is what I am praying for daily.
How do you cope with the emotions that having a chronic illness bring?
I thought about it for a while; here is what I wrote in response:
I think most of us learn to live with our “new” body/life. For me, it’s been easier to deal with because I already went through a “grieving” process when our youngest was born with Down syndrome. Those first few months were awful, and the next couple of years were tentative – we just didn’t know how everything was going to turn out. It’s been 11 years now (next week!), and things have settled down.
Everything has turned out to be just fine. We’ve learned to be more patient, and we’ve learned to celebrate the tiniest (and most important) things. Most importantly, though, we’ve learned that we are strong enough to handle whatever life may throw our way. We’ve learned that there are lots of things that we have no control over – all we can do is equip ourselves to handle situations as they arise. And we know that everything will be OK in the end – things may not turn out the way that we had hoped or planned, but we’ve learned to make the best of any situation.
I think that those of us who actually have a diagnosis are – in a way – the lucky ones. We have a “name” for our illness, and we can give ourselves permission to take it easy. If we didn’t know what was wrong with us, we’d still be pushing ourselves and just getting tireder in the process.
The good thing is that MG does appear to “progress” rather slowly, even after diagnosis. Yes, it sucks to have this condition, but whenever I start to feel sorry for myself, I remind myself that it could be a whole lot worse. I look around and I see people every day with cancer, Lou Gehrig’s disease, or some other illness that carries a possible death sentence. I see people who have been paralyzed, had a traumatic brain injury, or who have lost a loved one.
When I look at all of the things that other people have to deal with, I am reminded that – all things considered – it could be much, much worse. That doesn’t mean that I don’t have days when I throw myself a great big pity party – I definitely do! I rail against the limitations that my body has placed on me, and I lament all of the things that I planned on doing. And I mourn the fact that I will – realistically – never get to do those things.
Then, I make a list of all of the things that I AM still able to do. My mind still works, and thanks to the Internet, I am able to stay in touch with the world. I can still “talk” to people, even if I never have a chance to meet them in real life. I am able to spend time with my family – and as much as I feel guilty for not being able to do as many things with my kids and my husband as I used to, the fact of the matter is that they would rather have me here with them; they are all glad that I am still around.
I try not to be a burden to them, and I try to be understanding whenever they get frustrated by the extra workload that they have to shoulder because I am unable to do the things that I used to do. Lord knows, they didn’t sign up for this any more than I did. But we love each other, and that’s the most important thing of all.
I talk to God a lot – I know that not everyone is a believer, but I find great comfort in my faith. I wonder why I was tasked with this particular “cross”, but then I am reminded of the story of the man who wanted to “trade” crosses, only to find that his was the smallest one in the room.
One of the things that having a chronic illness like MG does is it gives you the opportunity to stop and smell the roses. I’ve figured out that one of the reasons that our elders are so wise is precisely because their bodies have “forced” them to be still – much like ours have. You have lots of time to THINK when you can’t do anything else….
So for me, I’m using this time to become a wise old lady – it’s what I always wanted to be “when I grow up”.
We’ve been given the gift of discovering what is truly important in life. Not everyone is that fortunate.