So I turned the big 65. This is not a post to illicit birthday wishes. Please don’t think it is. It’s just a bit of a lamentation on how debilitating illness causes you to lose so much living. I’m posting it for educational purposes for any who care to read it. Chronic and invisible illness is everywhere. Someone you know and love may be affected now or unexpectedly in the future. It affects every aspect of the ill person’s life and that of caregiver’s. The poor caregiver seldom gets a break and little recognition of the burden they carry.
I don’t feel like I’ve even lived enough to get old. There’s such a big gap between being at my peak just before I got sick at 33 and then being old. It happened so hard and so fast. I felt young and in my prime one day and 80, frail, and beyond sick the next. I still can’t comprehend how I was functioning one day, albeit struggling, and the next I was just broken never to recover and never to even level out or improve much.
These are not my “Golden Years”. They are hard and harsh and have been ever since I succumbed to illness 32 years ago. I will not be doing things I’ve always wanted to do and going on new adventures or enjoying simple things like spending time with grandchildren because illness robbed me of children of my own and a spouse. In general, people don’t stick around when your world is reeling and you can no longer be who you are. Nor can you meet and develop new friendships in the throes of illness and living in isolation.
As much as the only thing I ever really wanted in life was a simple life of home and family, it’s just as well I didn’t have children that I couldn’t take care of or a man who wasn’t in it when the going got tough. Even just the basics in life that children require take a lot of energy and a lot of going and doing. I know because of the big hand I had in helping raise my nephews before I succumbed to illness when their mother wasn’t expected to live. Then my mother was my neices’ daycare and I helped with them necause I wanted to. I lived in a mobile home in my parents’ back yard.
My nieces came along 10 years after my youngest nephew. They were the loves of my life and probably saved my life. I had lost everything when my oldest niece was born 3 years after I got sick and I really had nothing to live for and didn’t want to live. I had absolutely no income for two years until I won my meager disability and would have been on the streets if my parents had not graciously and without question taken me in. My body just wouldn’t work and I could no longer dance. Being a dancer was my identity. I wan’t happy not working. I had worked at something since I was 10 years old. I felt like a failure and a freeloader despite my parents never acting like I was and taking care of me willingly.
My nieces loved me dearly as did my nephews. I still felt a lot of guilt because I couldn’t be the fun aunt to my nieces that I was to my nephews and take them places and do things with them. They never knew me any other way, though, and they were always so eager to toddle across the walkway to my trailer once I let them know I was up in the mornings. It was part of their daily routine with us. We did simple low energy things together like read story books, play their children’s songs, watch their favorite children’s shows, sit on the steps and play “I Spy”, walk around the property on the days I could and look at flowers, and their favorite activity, lying on a quilt cloud watching. So even though I haven’t been a natural mother, I’ve been a surrogate mother of five.
I know no one ever really lives the life they imagined. Unexpected things derail plans all the time. Life limiting illness is a whole other curveball, though. It’s a boulder or falling rock off the side of a mountain. It comes out of nowhere at warp speed. It crushes you and injures you just as a literal falling rock would. You struggle to understand, your literal life is in jeopardy, your spirit is crushed, and in time your will to survive is because you can’t come back from the injury. Life as you’ve known it is over. You are permanently disabled and will never be anywhere near your former and true self again.
Don’t think I just let this happen. I fought against it tooth and nail. Mostly to my own detriment and certainly to my own and my family’s emotional distress. I’m truly surprised I’m still living. Not just because of the emotional upheaval and desperate thoughts of the early years, but because of the multiple real life-threatening conditions I live with that can go bad in a moment, the constant assault on my body on a daily basis and new ones always developing, muscles that don’t work well including autonomic ones like breathing, lung cancer that was undiagnosed for three years and the tuberculosis type infection that I still deal with that likely caused the cancer. I really don’t know why this body doesn’t just give up. I get up and push through every day and try to find some motivation, purpose, and small joys, not necessarily because I’m a fighter and all that lofty stuff, but necause it’s survival.
I don’t look forward to waking up every single morning slammed with such lack of energy I feel like my body shut down during the night to survival state, often wracked with pain, seldom having slept much or well, often feeling so overwhelmed with it all I want to cry, but that’s physical and emotional energy I don’t have. Life is miserable and the days are so long and tedious when I can’t manage to do something no matter how minuscule it is so I prod myself out of bed, literally stumble to the kitchen because my legs don’t have the energy to work right yet, make my tea and a little sustenance and try not to be too disheartened for, at least, a couple hours until I get a little more functional. Then I try to do something useful.
Chronically ill, homebound, and bedridden people have the same needs as everyone else. They mostly go unmet because the onus is left on the sick to initiate social interaction and since we can’t go and do, we are mostly out of sight and out of mind. The sick are often left caring for the sick because so many conditions are multigenerational. It’s a lonely and isolated life. We didn’t chose it. Others just don’t see us. If you don’t understand that we have the same needs you would have if you were in our position, you simply don’t understand the basic human condition. We don’t have the energy to stand on our soapboxes and try to explain it. We wouldn’t anyway. We need more than thoughts and prayers. We need tangible action.
Latest
24 reactions •
8 comments
