I never thought I’d live to see the age of thirty. I can remember lying in my bedroom at night, staring at my Holly Hobbie wallpaper, and counting up the years until I would be thirty. It seemed an impossibility. 2001? How could I survive that long? I was sick so often, in the hospital more often than any kid I knew. How could I ever live long enough to become an adult?
For some reason, I thought reaching 30 meant that you were an adult. At the age of eight, my Mom would have been twenty-eight and my Dad was thirty-two. If I had a question, they had an answer! Ipso facto – that was an adult; having answers. Now, having lived past thirty, I know they were just making it all up as they went along.
Now, here I am, approaching Fifty. A Bonus Round of sorts. I never expected this. I have also never truly felt like an adult. I kept waiting for that “AHA” to happen. I don’t wait for it anymore.
I think we are all making it up as we go along. Some better than others. Some nights I still lie awake, minus the Holly Hobbie wallpaper. I don’t count up the years, I remember them.
I had a few interactions the other day regarding Ehlers-Danlos; a friend and also a family member introduced me through Facebook to others who had either recently been diagnosed or have known for some time. When my cousin mentioned my blog it hit me that I haven’t written here in nearly a year. That is quite the stretch! I have been struggling with writing (nothing much unusual there) and this is a nice little boost to analyze all that distance I have put between myself and talking about how I live with my illnesses on a daily basis.
I have been dealing with illness my entire life. It is that simple. I don’t consider myself a shining star example of “How to Win at Being Sick” or the like, it is just what I know. Everyday.
Okay, here’s an example from yesterday. My ribs had been dislocating the two days before and I could barely stand up straight. I had barely slept from the pain, no position was a good position. Monday morning comes and I have paperwork to deliver to my landlord and meds to pick-up at the pharmacy. Soooo, I get as presentable as I can, hobble out to my car and get on with my errands. I play “Sly and the Family Stone” as loudly as I can because it makes me smile. Any little thing to remind you how fun life is. That’s what you use in your arsenal against pain: sunrises, birds singing, lattes, neighbors singing off-key, corsets, family jokes, potatoes.
Missions Accomplished, I make it back home and that is it for the day. I have reached the pinnacle of my contributions to society. Pain meds, Hulu, the couch, and my snuggly blanket a cousin brought back from their trip to New York, are my safe and cozy evening. Later, ASMR videos will be my solace to ease my mind before sleep. Here’s the other thing, I may spend time “alone” but I am surrounded by friends and family: in mementos, memories, texts, phone calls, Marco Polos, Google Duo, take your pick of social media, and gifts. I often imagine doing a virtual tour of my apartment so I could tell the story behind each warm token. I am spoiled with love and even in my overwhelming times of pain, I never lose sight of that.
Yes, pain has been a constant companion, and so has hope and gratitude. My Mom always says “One day at a time” and when you comprehend that for many, there are no more days, each day is even more precious.
loosestgirlintown 