Dear Complex Regional Pain Syndrome,
Everyone who has ever met you most certainly agrees that you are every bad adjective in the dictionary. Yet, that is still not saying enough. I have learned to smile, go to my classes, and enjoy my activities, even when the light touch of my clothes feels like a brush burn constantly. This didn’t happen overnight. I had to learn to become comfortable with my swollen, purple and blue extremities, as this causes many people to stare.
But over the last 3.5 years, I have learned more about suffering, compassion, and understanding than most people ever will. This has made me wise beyond my 19 years. CRPS, if I could get rid of you and go into complete remission for the rest of my life, never having to worry about the slightest injury awakening the beast, I would. But, what I would never forget the lessons that being chronically ill and burdened with pain 24/7 365 has taught me.
You will never win this battle, because I have a 100% average of getting through the days that I swore I wouldn’t make it through. I have had to adapt my academic life to you, but who knows? Maybe that is not such a bad thing after all. Maybe taking 10 credits a semester instead of 18 credits will allow me to enjoy my family, friends, and my overall college experience more rather than stressing every minute of every day.
I have come to understand the power of family when my life seems to be falling to pieces, because they will be the first ones running with the glue, tape, hammer and nails, to help me repair what is broken.
As far as physical activity goes, you haven’t stopped me. You can’t stop me, because my love of the sport is stronger than my fear of the pain and consequences that may result. Although doctors forced me to stop playing basketball, my love of skiing and taekwondo has taken me to unimaginable heights. Instead of being a destructive force attempting to tear me to shreds, you have only made me stronger. I never thought I would say this, but thank you for teaching me how to overcome the challenges I face each day. After all, it is not an easy world we live in.
CRPS, my nerves have enough issues, so feel free to go on your way!
As a college student currently using a manual wheelchair because of what we believe is extremely rare subtype of dystonia, which has a neuro-autoimmune component called stiff person syndrome that has contorted my feet into unnatural postures, I have been pretty spoiled by my fellow college students. You see, I am not used to being wheelchair bound, I am still learning to set my pride aside and ask for help when I need it. Even after two and a half months in my wheelchair, the reality of needing mobility assistance hasn't hit me yet. I have some outstanding peers always ready to lend a helping hand.
I am always amazed that people are offering to push me up the hills or hold or open the doors so I can safely get up the sometimes icy ramp and into the building. While a lot of this may seem like plain old-fashioned manners, not everyone is always willing to lend a helping hand.
On one particular evening, I was trying to get to my night class. The roads were very icy and slush covered. As hard as I tried, I could not get "Zip" (my wheelchair) across the street. I tried and tried, but I couldn't get traction on the ice and slush. My wheels just kept spinning out. I was stuck, but not for long. After seeing my situation, a young college student jumped off her bike, darted across the street, and asked if I needed help. She pushed me across the road and up on to the safety of the sidewalk. I thanked her repeatedly for being so proactive in helping me. She simply shrugged and said it was the least she could do, before going to retrieve her bike from the other side of the street
Everyone on my campus is pretty amazingly accommodating. Occasionally, there will be a rude individual or two blocking the handicap accessible ramp when I need it or I'll get a cruel greeting of "Hey Handicap!" Such is life and that part will never change. I don’t spend time dwelling on it. They aren’t worth my time and energy,
Having people exceptional students, faculty, and staff ready to help me when I need it most is very comforting. It is helping me accept my new reality. I am accepting myself for who I am, but having my peers be just as accepting makes this transition much easier.
To all the college students that open the door for me, hold the door open for me, helped me cross the treacherous ice covered streets, and offer to push me up the hills, thank you for going the extra mile. While some of this is just common courtesy, I want to thank you for doing it with a smile. It takes a special bunch of people to do that and the world could use some more of these extraordinary people.
1. Yes, we can still drive.
We only have problems with our ears. In fact, because deaf people are naturally more observant, they tend to be better drivers.
2. Some D/deaf people can speak.
Just because a D/deaf person is not speaking doesn’t mean that they are incapable of doing so. Speaking is a choice for many deaf, as some prefer to only communicate via American Sign Language (ASL) only. Sign Language is not universal. Some other forms of sign language include British Sign Language (BSL) and French Sign Language (FSL) to name a few variants of sign language.
3. Some can still hear.
Hearing loss is a spectrum. Some people like me cannot hear anything without cochlear implants. My dad and brother, on the other hand, can hear some with the help of hearing aids. Then you have people whose hearing loss is so mild that they don’t even realize it.
4. A lack of hearing does not necessarily mean lack of intelligence
While there are some syndromes that may be associated with hearing loss and intellectual deficits, the sky is the limit for D/deaf and hard of hearing people. Deaf people can go to school to be doctors, lawyers, teachers; Just about any profession imaginable! There are some restrictions with certain jobs in the military or law enforcement to name a few (for safety reasons). I always tell the children I meet that are just like me to “Keep your chin up and charge the mountain!” and never let someone tell you that you can’t do something because of your hearing loss.
5. Communicate with us directly when possible.
We know it may be tempting to look at our interpreters or family members to help communicate, but we want to communicate with you. We are still humans with feelings and communication capabilities. Some suggestions for communicating include: a pen and paper to write things out, gesturing, basic sign language (if you know it!), and if absolutely nothing else is a possibility for communication, we can attempt to lipread. However, only 30% of the English language can be lip read, so it is not very effective.
6. Deaf people use do not necessarily Braille.
Braille is intended for those that are blind. We do not necessarily use Braille unless we are blind too.
7. Not all deaf parents have deaf children.
While my brother and I were born with deaf/hard of hearing as a result of our father’s genetic hearing loss. This is not true and there is actually a special name for these hearing children born to D/deaf parents. They are referred to as Children of Deaf Adults (CODA). Very often, they are bilingual in both English and ASL.
8. D/deaf and hard of hearing people communicate in many different ways.
If the hearing loss is mild enough, the individual may just prefer spoken English. For those with little to no hearing, some many still communicate via spoken English with the assistance of high-powered hearing aids or cochlear implants. It seems to me that the vast majority prefer sign language, because it forms a special culture of people who share a language. The sense of community in the Deaf culture is very strong. ASL is a very pretty, visual language and I like to encourage people to at least learn how to fingerspell.
9. Cochlear implants are not a cure
As a bilateral cochlear implant recipient for nearly six years, I can tell you for sure that cochlear implants are not a cure as many believe. They have their limitations, are capable of breaking or malfunctioning, and while some people like me have amazing results from years of hearing practice, not everyone is as lucky. When I take my implants off at night or to shower, I am just as profoundly deaf as I was before the implants.
10. The D/deaf don't have to be "fixed".
This is a controversial point that has divided the Deaf and hearing worlds for years. I made the decision at the age of 12 to receive my implants. My parents did not make the decision for me. Hearing aids and cochlear implants are just 2 of the many options available to D/deaf/hard of hearing people. I personally lip read, sign, and primarily use spoken English depending on who I am interacting with at any given moment.
11. “Never mind”
Ask D/deaf or hard of hearing person and they will probably tell you that the most annoying thing they hear on a regular basis is “Never mind.” Some people are only willing to repeat things a certain number of times before they finally give up. This is extremely frustrating because whatever the person was trying to say at the time was clearly of importance to them and when you can’t hear the message, suddenly it doesn’t matter.
Next time, you encounter a D/deaf or hard of hearing person, keep some of these facts in mind for successful communication. They will thank you for it!
I am a 20 year old junior at the college of my dreams. I am studying Emergency Medicine and Communication Rhetoric and minoring in the Administration of Justice and National Preparedness and Emergency Management certificate. At some point, I want to go and get my paramedic certification when my health allows. I have several chronic illnesses and this blog and website serves as a place for me to share my journey fighting CRPS and my other conditions. I hope that this blog can also serve as an outlet for raising awareness for rare diseases. Thanks for reading and I hope you enjoy! Feel free to comment; I'd love to know what you think!