If you follow me on social media sites, you may have noticed I’ve been quiet lately. Some of you may know why. When I was twelve years old, my knee cap first slipped out of place. I had my first knee surgery at 14 to remove a piece of bone sliced off when my knee cap went out of place. Over the years, due to hyper-mobility (I’m super-flexible basically) other joints have partially or fully dislocated…my jaw, ribs, hips, and my shoulders. My elbows, hands, and feet all have issues due to hyper-mobility. (For those familiar with the condition, yes, Ehler’s Danlos Syndrome is on the doctors’ radar.)
I’ve been in frequent pain since my twenties but about two years ago, it became constant and I started tripping blood tests and my use of OTC pain meds started reaching a certain toxicity. The constant pain was numbing so I couldn’t even tell when I had ribs out anymore. We started the process of testing and diagnosis and then RX pain meds actually increased my hyper-mobility in my hips. In December of 2015, my shoulder dislocated twice (once in my sleep) and I went into a sort of crisis mode.
There’s a definite clarity in being in crisis mode…when you know that you can only sit in front of your computer for two hours a day and your son needs you to help him with his homework…when you know that driving your kids around will put you in so much pain you’ll need to lie on a heating pad for hours. It took three weeks to recover from a road trip. Doctors appointments had a cost. Walking took energy. And the pain…the ever present pain…that made thinking difficult and my sense of humor and patience limited.
The ability to prioritize time is something I’ve always lacked, but when faced with excruciating pain where it felt like someone had shoved a spear into my hip joints, you develop skills in accomplishing the really important things quickly and you recognize what really matters.
I never recognized what really mattered, not like I do now. Three weeks ago, the orthopedic surgeon looked at x-rays of my hips and started talking about hip replacement surgery. I was horrified. I’m thirty-nine. And I kept thinking, “I can’t…I can’t have hip replacement surgery.” Not because of the pain. Not because of the money even. Not because of the recovery. I kept thinking, “I can’t do that to my kids and my husband. It’ll take time away from them. They need me. I can’t be out of commission for that long.” After the doctor left, I realized that I hadn’t asked him what I could do so I could sit for longer in order to do more writing… And then I realized it didn’t matter. My family came first. What energy and abilities I have belong to them first.
I’m in physical therapy now and things are getting better in most ways. I’ve adapted. My husband got me a chair that allows me to sit longer. I’m starting to be active again on Twitter and Facebook. I’m actually writing this blog post. I’m finding the time and energy for things lower on my priority list. Writing is valuable to my well-being. And the joy I find in sharing my writing is worth a great deal to me so I’m excited that I can allocate more time to something that defines me.
In some ways, this crisis has been a blessing. That epiphany of what really matters might save my sanity. I’d been killing my soul, mind, and body trying to keep up with the Joneses in the publishing world. I looked around and saw how much others put into their careers and thought, “I should do that. I need to do that.” And I ignored the cost. There is a cost. There is always a cost when you choose one thing over the other. Emergency living strips away things that are nice and make you happy and leaves you with what really matters. This is life boiled down. This is what is vital.
Karl Marx said something…and, yes, I can’t believe I’m quoting Karl Marx…from the Communist Manifesto no less. He said, “All that is solid melts into air, all that is holy is profaned, and man is at last compelled to face with sober senses his real conditions of life, and his relations with his kind.” Dragging that out of context, it speaks to me on what really matters. (That probably means I’m secretly a communist. Kidding. Maybe.) Our relationships with others and our quality of life matter. People matter to me. Friendships matter. My kids and husband matter more than can ever be quantified. If you’re reading this, you’re important to me.
The other thing I’ve learned from this crisis is that I matter. The number of people who have helped me or who have been patient with me…I can’t even begin to tell you. People have stepped up and been wonderful and amazing. There are bright and shining examples of humanity in my life. I am so blessed to know so many caring and compassionate people. It’s very difficult for me to ask for help, but I haven’t needed to. Thank you for understanding. I never expected to need like this…to be the person that can’t function without help. I am a stubborn, obstinate soul and this has cut me off at the knees. Thank you. From the very depths of my heart, thank you. Thank you for your thoughts, prayers, patience, and time. Your time…and the effort you’ve spent on my behalf matter…so much.
I’m finding my way though. I’m finding my sense of humor again. It’ll get easier and better. In the meantime, I’m learning to appreciate that these moments and everything from the pain to the clarity is valuable. This is what matters.
(The picture at the top is of my daughter and I when she was little. I love my kids so much…and I think you can tell in that picture. Thank you, Karen Echols, for taking that picture.)