At the tender age of 12 the doctor told me that my mom had only two months to live. It was news that I couldn’t fully process at that age, maybe it sent me spiraling into a state of shock. I don’t know, but luckily, my mom was tough as nails, and I didn’t have to process it completely because she miraculously ended up living another 20 years. Prior to her illness she chose to treat her body in ways I wouldn’t, she was a drinker, and yet…her symptoms then and my symptoms now seem very similar and I don’t drink alcohol. It’s for that reason that I believe she was misdiagnosed due to her lifestyle and had actually suffered from undiagnosed MECFS. I think the alcohol was likely to deal with the pain. This post isn’t about that so much as it’s about the effect chronic illness has had through the generations of my life. Since my son is grown I don’t really discuss the dynamic here, but today I’d like to.
Learning that my mom was sick was terrifying, I spent the next 20 years walking on egg shells around her. Never knowing when we’d share our final words. Every time the phone rang after 9pm my first thought was ‘oh no my mom’. I suppose in some ways I cherished the time we did have together even more so, but in reflection, not nearly enough. My colorful, funny, beautiful, incredibly intelligent, and seemingly clairvoyant mom was losing a battle and I couldn’t help her. I watched her body fail her, I watched her fade away. I watched helplessly. I called her doctor, I pleaded for answers. My heart broke for 20 years, but that heartbreak was nothing compared to when I finally said goodbye 16 years ago. She was my compass, and without her I’ve been adrift.
“When you know better you do better.” ~ Maya Angelou
The quote, When you know better you do better, has always resonated with me. I’ve tried to emulate it in my life and it’s because of that there’s no way I would ever intentionally put my son through the emotional turmoil I’d been through with my mom’s illness. When my son turned 18, almost five years ago now, I’d been sick less than one week. He’d just graduated high school and the world was sitting before him for the taking. As my illness progressed, that world sitting before him started to dwindle. Not only that but the longer we went with unanswered questions, the more my fears started to grow, but so did his. It wasn’t just my life that turned upside down, it was his life too. He went from having a mom, who paid all the bills, and handled all the things, to a mom who needed to be driven to doctor’s appointments, who could no longer grocery shop, walk the dog, or deep clean, who no longer was able to pay bills, and all of this with no other blood relatives around to help. Every other week while I sat in therapy dealing with the jolting reality of this awful illness, he sat in the car waiting for me, and I can’t help but think it was him who should have been in there too, just as much as me. He had to step up and take over the car payment, my car, a car way out of his price range that ended up needing thousands of dollars in repairs. But he did it, he handled it all in stride, he took me to the appointments and spoke up when I needed defending, for years he worked swing shifts, so he could be around during midday, he dutifully did everything that was asked of him. And heartbreakingly, it shows.
He’s 22 now and has the shoulder weight of a middle-aged man. He’s now working a full-time job, a part-time job, and another side job to pay for his food and bills. He was going to school too but it all became too much, and he decided to delay school. One of hardest parts right now is knowing that he’s not happy, he’s having health issues of his own, and in a roundabout way, as much as I tried to avoid making him feel as I did with my mom, it’s my fault. You can say oh it’s not your fault, and I know it’s not my fault I got sick, but as a mom who is supposed to protect your child I’ve sorely missed the mark. Instead of protecting him this illness has thrown him into the thick of an experience that’s filled with unfairness. As any mom with MECFS knows, one of our worst fears is that our child will get it too, and I’m terrified for him. His heart hurts, I can see it on him. He’s angry, his mom is sick, and it’s terrifying. The world feels incredibly cruel. He deserves better than this. What am I saying? He didn’t deserve ANY of this. I know my mom withheld things so as not to concern me, but I don’t do that with him, I’m honest, but factual. The doctors keep saying you have this illness, or that condition, but it won’t kill you, so we find comfort in that. We have to. You see I know his heart is breaking still, and neither he nor I can fix it, I know because I’ve been there with my own mom, and I know there are no answers to make it better, but as a mom…I just want to make it all better, and I can’t.
So, with that, if you are the type of person to pray or send energy or good vibes or light, my son and everyone else’s child that has had to endure this illness alongside their parent could use your thoughts right now. My son is a neat person, incredibly smart with a big heart, and the best sense of humor. Honestly, he’s hilarious! He’s the kind of person that gives water bottles to homeless people on hot days and sweatshirts off his back on cold ones. Often I think I want to get better more for him than for me. He deserves to live a carefree life, we all do.
Thank you for stopping by today for a read. A few more doodles below. Hug your loved ones, they need it, especially the quiet ones who don’t ask.