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
Children with cerebral palsy or increased muscle tone can be at higher risk of developing hip issues; their hips may begin to sublux, or progress to dislocation often requiring hip surgery. The whole process of surgery is scary and full of possible complications. But once that is done, returning to previous activities can add another fear; will my child hurt their hip from doing this? When they have pain, how much do parents need to worry or run back to the orthopedic surgeon to make sure that hip is still ok? Read more
Sometimes I dream of the perfect blog post. And then I wake up. Read more
Many people chuckle at the frustrations illustrated by people in infomercials, and cry out “Lazy!”. I don’t fault them for this, but if you look closely, you’ll notice the seemingly simple task is a struggle. Read more
A lot of my fellow writers have already discussed the harshness of winter for those of us with disabilities that impact our mobility. The reason being is simply because it’s a rather pressing issue. Unpaved sidewalks are more than just a general annoyance. They pose a physical danger as well. Transportation may also be a bit more of a hassle than it already is to begin with, but for me the greatest obstacle is chronic pain and how it coincides with the pressure to be a “Super Crip”. No matter where I go, I’m a voice for others like me. As odd as it may sound to others, my visibility in the public eye is very much a social-political statement, generically speaking. Now, add winter weather to the mix and suddenly, I’m less visible. I now worry that my employers think I’m slacking. That my friends assume I’ve fallen off the face of the earth, or that my date has mistaken my reschedule as a sign of disinterest when that isn’t the case at all. Read more
As a woman dating with a disability, I’ve noticed a lot what I like to call “superhero”-ing. By this I mean men who believe they need to “save” me when they do not. Don’t get me wrong- I wouldn’t be opposed to dating Bruce Wayne or Dick Grayson, but this is something entirely different. Many people view the wheelchair as a form of ice breaker, and to an extent, I don’t fault them. However, when the flirtation isn’t exactly mutual, it puts me in a rather awkward position. Read more
Lyds, I will never lie to you.
Never. Read more
Routines based intervention (RBI); has become the new way to support families and children with developmental delays or disabilities for early intervention. But what does this really mean? I think physical and occupational therapists have evolved over the past few years in really getting into what this looks like. Read more
Soon, winter will be upon us and for a lot of us with disabilities, that means a decrease in the ability to go out due to mobility strains or health concerns and occasionally a mixture of the two. This can be a very isolating time for some. This is how I’ve been able to cope with the winter blues and shift of weather, some of them may seem like a given, but I hope that they can be of some help to you. Read more
This week, Jennifer’s husband Bryan shares his thoughts about the unique experiences he has as a father to a child with cerebral palsy.
As we pulled up to the birthday party, my head churned with anxiety and despair about how the next couple of hours were going to roll out. The birthday party was held at a park complete with the climbing towers, walkways, tunnels, and slides. Something that every kid loves to do, including Roa. Over 8 years, I have spent many hours climbing around these multicolored fun factories; helping him climb steps and ladders, pushing and pulling him through tunnels, sliding with him down the slides, and doing my best to get him participating with the other kids. But not this day; I couldn’t do it. I had to admit it to myself and, worse, to him. Roa is now 8 years old and 75 lbs. He is a big, strong boy. I am 43 years old with all of the aches and pains that go with it. Most days, I can help him keep up with the other kids for a while. But this day, I couldn’t do it. Lack of sleep, too many aches and pains, unwillingness to experience the next couple of days living in pain…all reasons that entered into the decision. Also, kids are a little weirded out by a grown man crawling around a play set with them. Totally understandable. Read more