So, I have Multiple Sclerosis, or am I a person living with Multiple Sclerosis? I can't keep up with what's socially correct anymore, so we'll stick with me just having the damned disease. I'll be direct in saying that it's a shitty disease. Not just for me, but for the people closest to me. I'll expand more on this pity party in a future post.
By most standards, I'm doing pretty well, all things considered. I have limited disease progression. I'm still predominantly mobile and the permanent damage done to my nervous system is manageable. I have a permanent 6th cranial nerve palsy, which causes double vision or diplopia for you medical nerds. I also have all of the included bells and whistles that come with the disease when you purchase the extended warranty: polyneuropathy, pain, strange sensations, shooting pain, and, of course, debilitating fatigue, to name a few... I don't want to give away all my secrets just yet.
I say all this because it's relevant to my lived experience as a parent, especially considering I am a stay-at-home parent. Most parents are tired and in good health, and I don't want to impugn the lived experiences of other people. But I feel like I can't always relate when others say they're tired. It's not because they aren't tired, but it's because I can still remember what being tired was like before MS, and it's not the same. (There are absolutely too many "tireds" in this paragraph and it's making me tired.)
So, you may be curious as to why I'm droning on about how tired I am and why I'm probably more tired than you? Right? It's because the way I feel has adversely impacted my ability to appropriately feel empathy. It's not that I don't have it! For my kids, empathy abounds (mostly, unless it's something stupid), but when it comes to my fellow adults, I have less of a reserve. I believe this is especially impactful for my favorite fellow adult, my wife.
You may recall that we've had a wave of brown bombers come through our home, painting toilets and ruining underwear. Needless to say, we've had some folks feeling a bit under the weather in the BeardDad household. I've found that finding softness with the ones I love has become a real challenge for me when they aren't well. My current, constant, lived experience is most often rife with pain and fatigue but I'm still expected to function like everyone else and I've come to expect the same from others which isn't fair to them at all. I am sorry for that.
So, what's the point? My point is that, regardless of what you may be experiencing, it's important to show appropriate care and compassion for the people that matter most in your life, if not all human beings. Being a dad and husband isn't supposed to be about feeling sorry for yourself all of the time when things suck; it's about taking care of people and also taking care of yourself so you can continue to do the job and not be a shitty person while doing it. I'm going to try and hold myself more accountable, and I would encourage you to do the same. Dad out.