Anyone who knows me well enough, knows I grew up without a lot of money. We struggled. My mom worked her butt off giving us the basics. We had a lot of love. Though we rarely said it in words, we always felt it. Words weren’t needed. We just knew, and know. So, yeah. A lot of love. Not much money.
Because of this, most of what I had as a kid was second hand. Used. Handed down. Often, not in original working order. Sometimes new, but off the discount rack. I still shop that way. When I go into a store, I head straight to the back to the discount rack. It’s very rare that I buy anything a full price. Often these items don’t last long. Or they don’t fit quite right. A sleeve slightly longer than the opposite. The left pant leg a bit wider than the right. A letter missing off of the brand stitching of the lettering. Most times, the only problem it caused was some teasing from the kids at school, or an awkward feel to the fit. Nothing, in retrospect, very pivotal to the daily use of the item.
Unfortunately, that’s how my body feels since the onset of MS. The downside of the situation, in this case, has major effects. The body is off. Mis-matched with my mind. It doesn’t quite fit right, like a pair of underwear off of the discount rack, causing not just an uncomfortable feel, but a complete failure in use, at times. This is the problem.
There is very little chance of this improving, either. Yes, this is a disease with no cure, currently. Yes, over time, this disease will debilitate my motor skills, if I live long enough. (This is already beginning.) Yes, completing what are common daily tasks to most, is an all day challenge for me. Yes, I lie on a regular basis when asked how I am doing. Yes, I feel like I have lost the real me forever! (I’m trying to be positive. I’m using ‘Yes’ often. That’s positivity, right?) Yes, I’m sick and tired of having this fucking disease.
This journey is a combination of good news and bad news almost daily. The problem is, my perspective of ‘good news’ has changed drastically. ‘Good news’ used to be…….Jesus, I’m not really sure if I remember what good news used to be. I do know what it is now, though. What is ‘good news’ for me, now? ‘Good news’ is finding out that a summer day won’t have temps above 80 degrees. On a day like that, my eye won’t go blurry. Fatigue won’t weigh me down all day. Maybe, just maybe, my tremors will be calm enough that, if I decide to dine on rice, couscous, or anything liquid, I will be able to transfer it from the plate/bowl to my mouth without too much spillage. ‘Good news’ is waking up in the morning with MOST of the feeling in my leg. After a morning like that, I know I’ll most likely be able to walk without my cane. On really good days, I can walk like a normal human being, almost without a limp…..almost. ‘Good news’ is finding out that I am accepted by the Vanderbilt Neurologic MS program. This means I’ll be getting access to some of the best MS treatment available today.
This is ‘good news’ in my world today. I miss old good news. This new good news doesn’t cause elation. It does not inspire hope. At least, not the levels of aspiration that I used to get with good news. Now, ‘good news’ simply signifies ‘not as bad’. My hope used to reach lofty heights. Today, my hope reaches making it to work/keeping my job, walking without aid/a limp, having the energy to go to a planned event, or simply not having pain.
This is the level of hope that an incurable disease can instill in a person. This is, for all foreseeable futures, my reality. The meaning of the word ‘good’ is completely different, now. So different, that I’m not even sure if I have a recollection of what ‘good’ used to represent for me. Today, it simply means ‘better than bad’.
So, yeah. If you happen to be one of the people that I do actually see from time to time, when you ask me how I’m doing and I say “I’m well.”, all that really means is this. At best, it means I made it out into the world again today without too much trouble. At it’s worse, it means I feel shitty, completely shitty, but I’m not going to lay that on you. The pain, fear, and hopelessness is barely being kept at bay, but let’s be honest. When one asks someone else how they are doing, does that person really want to know, or are they just being polite?
P.S. I know it’s been a long, long time since I posted. It’s been a rough time recently, but I plan on talking about all of it sooner or later, here on MSFMS.
Thanks for reading. Talk to you soon. (Hopefully.)