I don’t want to lean on my brother too hard if he doesn’t want to lean on me
He's opening up about his MG, but I worry about pressing him to take my advice
Written by |
Even 26 years after his myasthenia gravis (MG) diagnosis, my twin brother, Aaron, struggles to talk about the effects of his disease. But he is beginning to open up a little more.
Recently, he’s begun to talk about the trouble he has with walking. I thought this was an issue that started only a few years ago, which is when I first learned of it. But he tells me now that he has struggled with walking, leg muscle weakness, and balance since his diagnosis.
He told me not too long ago that he had fallen in the street and has had difficulty going up stairs. The cold weather this winter had given him a little extra energy, though, and he was able to will himself to the gym. He even managed to walk up five flights of stairs to his apartment, which he sometimes does if the elevator is out.
I told him I worry more about him going down, not up, a set of stairs — like Chevy Chase doing his impersonation of President Gerald Ford. That skit used to make us laugh, and we laughed as we remembered it.
Leaning in and leaning on
I wonder if Aaron has mostly kept the severity of his leg muscle weakness and the emotional weight of his disease to himself because he worries about being a burden to me. Maybe he doesn’t want to face losing his independence and have to fully accept his disability and the limitations it is putting on him.
I wonder why I didn’t make a better effort to fully understand his disease a long time ago. We talk more openly now, but I don’t know sometimes when we talk on the phone if I’m interviewing him or interrogating him. If I push too hard to understand, or push my advice on him, will he just shut back down? Is it my place to suggest what he should do? But how hard should he keep pushing himself?
I’ve suggested that Aaron use a cane to help him get around. He’s politely brushed the suggestion off, but admitted that his doctor also recommended that he get one.
I get a little irritated about him taking risks, but I don’t want to lean on him too hard if he doesn’t want to lean on me.
Maybe he will be willing to lean on a cane. He said he would, but I doubt it will be soon.
Note: Myasthenia Gravis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Myasthenia Gravis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to myasthenia gravis.
Rosa
Hi there Aaron, you seem like an amazing brother who loves his brother very dearly. I can’t give advice regarding your situation, but what I can say is that as someone who likes to honor their independence, sometimes if you just get the thing for the person, someday they will probably use it. For example, my roommates kept suggesting that I get a a disability shower chair, I am a 22 year old woman who just didn’t find it appealing, and just an unnecessary consumption of space for my roommate and I who shared a bathroom. One day, my roommate sends me a picture of a shower chair that one of her regular customers gave her, since she’s mentioned me during their conversations. Now I’m not going to lie, that chair sat in front of our bathroom next to the door for a good couple of weeks until she just put it in the shower herself. The morning after she placed it in there, I went to shower before work, and I smile and just chuckle a little bit, remembering how much she’s been bugging me to use it and continuously mentioning that it will help me. As I start to begin my shower, the first thing I do is take a seat. I begin to laugh at the fact that how maybe I should accept the extra help, and that it’s okay. It allowed me to have a seamless shower and it wasn’t as inconvenient as I thought. We live with something that quite literally forces us to be dependent on things and people. I like to think that it embraces the need for community, and to love one another. I and many others just tend to push that part of us aside because it’s a constant reminder of our dependency. But trust when I say, we ALWAYS appreciate the help. Actions speak so much louder than words to us. Get the cane for him and if he doesn’t use it I’m sure someone would gladly take it off your hands. Though id like to guarantee that he might use it someday, a day where he feels comfortable with his dependency and allow himself to enjoy life seamlessly. - a 22 year old stubborn woman who will always live life to the fullest.
Allen Francis
Rosa, thank you so much for your lengthy and personal message. Actually, I'm Allen, Aaron is my twin with MG, I'm sorry I did not make that clear. I read your message several times and I thank you. Your suggestion is brilliant and I will definitely do it. I will buy it for him as a gift and see what happens. That will be a lot easier than trying to convince a grown man what he should do when he has his independence, like me. Thank you again.