Written on November 17, 2013 by Daniel P. Malito
This past week, my mom was reviewing the final draft of my book. I asked her to look for any typos or other obvious issues, and she has done a fine job of it. Hopefully I will be able to make all the changes this week and get the book into production. During this review process, however, something happened to my mother that surprised me but shouldn’t have: reading the book affected her so much that one evening I found her in tears.
I found my Mother crying as she was reading my book and when I asked her what was wrong, she said, “I’m so sorry. You have to deal with so much. I’m so sorry you have to live like that.” As you can imagine, it was not my intention to ruin her day when I asked her to proofread my book. I felt guilty that I had asked her to re-live some of the worst times of her life – times when she had no idea if I was going to live or die, times when she was waiting to hear if I’d ever walk again, and times when she had to hear horrible news from doctors again and again.
The people in your life who bear this sort of burden, like my mother, mostly do it without complaint. It is our job to remember that they do deal with illness day in and day out – your illness. They don’t have any idea how actually having your disease feels, and they know it. This makes them hesitant to say certain things, and it can definitely make them more likely to keep quiet about certain things. As you can imagine, this takes a huge emotional toll, almost as much as having a chronic illness does.
Making the lives of people around you easier seems like one of the things you shouldn’t have to worry about when you are ill. In an ideal world, that might be true. Unfortunately we live in a less-than-ideal world, and our illness spreads well beyond the border of our own bodies. Family and close friends who you deal with on a regular basis need your help. You have to help them to understand your illness, you have to not get angry with them when they make mistakes, and you have to let them know that they are helping you each and every day. I know some of you find it difficult to be honest with family and close friends, but you will end up doing more damage.
Perhaps one day you will write a book about your chronic illness and your mother will cry when she reads your manuscript. Don’t feel guilty. First of all, remember that while she might not have had a choice for her son or daughter, she certainly had a choice to simply give up. There are many parents out there who got going when the going got tough. If your mother (or father) cares enough to shed a tear when reliving the more horrible moments of your disease, you can be sure that she (or he) cares. All you have to remember is that all of these people in your life are there because they want to be, and they care because they choose to. Always know that the people you rely on do so because they choose to, and treat them accordingly. Be honest, be respectful, and, above all, be patient. No one knows what it’s like to be chronically ill, as I said, except those of us who are.
Try to imagine what it’s like to deal with someone like you on a daily basis. I frequently hear people say “oh, but, who am I to complain.” When I hear that I always respond “Don’t worry about it. Just because I’m always in pain doesn’t mean you feel less of it. Everyone has their own limits.” Trust me, if someone says the wrong thing, they probably aren’t doing it to be mean. Try to remember what it’s like to always be afraid of saying the wrong thing or of asking too much. Above all else, treat those close to you as you would treat anyone who is doing you a favor, because, in essence, they are.