The Captain in Cool Hand Luke famously said, “What we’ve got here is a failure to communicate.” Lately, I feel like that quote has taken on new meaning in my life with MS. I’ve actually sent videos of it to friends as I reach out to them after a long period of time. I’ve gotten so incredibly bad at not only communicating with people but keeping those lines of communication going. When I finally get back to friends (and family), I like to emphasize the end of the Captain’s quote too, “I don’t like it any more than you, men.” While the circumstances differ than they did in the movie, it’s a fun way for me to admit that I’ve become terrible at keeping in touch and that it isn’t at all intentional.
Brain fog and memory problemsMaybe I’m just a bad person and that’s why I can’t seem to get back to people, but I don’t really think that’s all there is to it. Rather, I have some MS symptoms that plague me and make it much more difficult to maintain communication with friends and family. One of the prime symptoms that causes me problems is that of cognitive dysfunction. People love to use the term brain fog, but it’s so much more than that. Yes, I get foggy, but I also have a tremendous amount of memory problems. Making lists and reminders is absolutely critical to me. If something comes along and distracts me from that, then it can be hopeless for me to get back to someone. I may even think of the person, may even think about how it’d be nice to talk to them, but my mixed up brain may not associate that with actually reaching out and doing it. That’s a tough thing to understand unless you’ve actually gone through it, but it’s a very real issue.
The impact of fatigue and painIt’s not only the mixed up connections in my memory that inhibit my ability to maintain lines of communication. Other symptoms like fatigue and pain have an impact as well. There are many times where the idea of even sending a text message to someone can seem so exhausting, so impossible. Remember, fatigue is much more than being tired, it’s a prison that locks our minds and bodies away. I know it sounds so simple, right, to send a text message or an email to someone, to even just respond to what they’ve already sent. However, when fatigue and other symptoms set in, it might as well be climbing Mt. Everest, that’s how challenging it feels. Everything becomes limited, at least it feels that way. Am I going to try to make it to the bathroom or engage in a conversation? Sometimes, those are the types of choices we are left with.
The true culprit of communication failureIn the end, it isn’t even one symptom that is usually the culprit of communication failure, it’s several that add up. Whether you have an illness or not, I think once you neglect reaching out or responding, it’s easy for that behavior to become a snowball rolling down a mountain. At the end, it’s pretty hard to stop. It’s hard to reach out to someone after a long time of not talking. It’s even harder when body and mind have gotten in the way. When the other person can’t really understand what we are going through, it becomes an incredible challenge to explain yourself.
A very lonely illnessOne of the worst aspects of our disease causing us to be failures at communicating, is that it’s a very lonely illness. It’s a disease that creates problems with maintaining friendships and other relationships. So many of us complain about losing friends because of our illness, this is an example of how many of us don’t put sole blame on the other person. We very much contribute to the degradation of relationships, however, as I’ve hopefully illustrated here, we do have our reasons. If you are upset that you haven’t heard from us in a while or you are upset that we haven’t even responded, please understand that we very much want to. Know that it isn’t as easy as it may seem and know that no one is as disappointed in us as we are.
Thanks so much for reading and always feel free to share!