What is pain? Pain is knowing that you will never be worth fighting for in life. Pain is knowing that your life is a lie. Pain is reading how much your dad loves you and having him tell you to go find your new daddy. Pain is seeing your mother cry because your dad has snapped and punched her. Pain is when there is nothing else left to feel because even your anger has been beaten down. I am in pain. Read more
Hi everyone it’s Isabella! Lately I have been so completely wrapped up in my own pain and hurt that I have forgotten that my dad is in pain too. I can’t pretend to understand what he is going through and he can’t pretend to understand how he is hurting us. I don’t want to forget the good things about life and let it hold me down so I am going to write some good memories of my dad to share, but also to remind myself. No matter how rough life gets I’m going to shove it right back. Read more
I discovered that after having a spinal cord injury staying healthy is not as easy as it was once upon a time. I was in great shape before my accident and since then have continued a rigorous exercise program and a healthy diet. So someone please explain to me how I am now 36, have a pacemaker, and my wife’s Pops who is in his 90’s is in better physical condition than me. The man sleeps 4 hours a day to wake up and meditate before doing tai chi. Something is seriously wrong with this picture. I know the man lives to humiliate and torture his grandkids and great grandkids with his practical jokes and stalking them to catch every possible blackmailing moment on film, but I spend 2 hours a day in the gym with my wife 7 days a week. Read more
I’ve touched on the stigma of chronic pain in an article previously, as well as the “Super Crip” complex that I’m desperately trying to rid myself of. I have yet to address the stigma of taking medication for said pain though. So many people do not understand how spasticity works. Hell, I’m still learning about my disability and I’ve lived in this body for twenty-six years now. I have had to turn down Vicodin, and many other medications due to my own fear of becoming too reliant on these medications and leading down a dangerous path. I have some family members that talk about “Big Pharma” and preach yoga as though it is the be all, end all, neglecting to remember that I take over five medications every day to function as my truest self. One who is relatively free of pain, and happy. I know that my loved ones mean well, but it’s rather insulting. They fail to understand that while I agree some prescription medications are pushed onto patients with too little thought, medication, physical therapy, yoga, and meditation can and do coexist rather peacefully within my life. Read more
The pleasure principle can be hard to find after a spinal cord injury. While some with spinal cord injuries still have sensation of their lower extremities (a little factoid many don’t know), there are still many that cannot; and I’m in that camp. When you have extremely decreased sensation in your body, it becomes a scavenger hunt finding a new place that gives you pleasure. Read more
My battle with multiple sclerosis began several years ago with several battles of optic neuritis. I was misdiagnosed many times because MS is not usually diagnosed in your 20’s. I was a few years too late and a few years too early for my doctor to want to consider it as a possibility for my situation despite my other symptoms. I know that I am overly educated in my own health and what symptoms could be caused by this or that and I’m very vocal with my doctors about my concerns, I suppose I came across as someone who has spent too much time reading on the internet and convinced myself that I had MS. I demanded to be sent to a neurologist. That doctor sent me for an MRI the same day and there was my diagnosis. I’m fortunate that I have a very mild case of Relapse Remitting MS at this point. It’s a bad year if I have a flare more than twice, and my symptoms are not severe. Honestly I can’t blame my doctor for not being overly concerned, because my symptoms were and still to this day are very mild. If you’ve ever googled your symptoms wondering if you had more than a simple cold you’ve probably learned that the almighty internet will diagnose you with one of four things. You will have MS, lupus, cancer, or AIDS. You most likely suffer from health anxiety and not a serious health concern if you’re googling symptoms continuously. I unfortunately suffer from MS, lupus, and cancer. I call my body the human game of Jenga, where one illness keeps the other one in check, but I’m waiting to topple over at any moment. Read more
It’s not easy sitting all the time. We all know the human body wasn’t meant to exist in such a way, but yet we do it, many of us decade after decade, all thanks to modern science. Ironically however, modern science hasn’t figured out how to cure back pain. Read more
Once you become a parent to a child with special needs you are never the same. There is a before and there is an after. Sometimes you can’t even remember the before you. You only know the after. Don’t get me wrong, my son is amazing and brings me great joy each day. He brightens my day and brings deeper meaning to my life. However, the grief and heartache can on occasion be overwhelming, swallowing you whole on some of your hardest of days. We absorb so much bittersweet pain, balancing the hardships with the joy. You’d think we’d be the most removed from taking on the sadness of others, but the truth is we seem to be the most equipped to being present in someone else’s pain.