>This was saved from my old blog.

I realize that not everybody is comfortable with asking questions about disabilities even though most of us with disabilities prefer it that way. For me personally, I’m a blunt person for the most part, so I would rather people just ask what’s on their minds rather than stare or wonder about this or that like having a big elephant in the room. I prefer people get their curiosity out of the way quickly so we can get on with knowing me the person inside without my disability being this thing overshadowing me. People commonly say they’re afraid of offending me and stuff. I totally understand that. I would be afraid of offending me too if I was in other people’s shoes. There’s no need for fear with me though. I’ve been asked everything from, “How do you write?” to, “How do you have sex?” so nothing offends me anymore.

This is the skinny on my disability. My diagnosis is Arthrogryposis Multiplex Congenita but I just call it Arthrogryposis or AMC. Here is the basic explanation of it from WebMD.

Arthrogryposis Multiplex Congenita, a rare disorder that is present at birth (congenital), is characterized by reduced mobility of many joints of the body. Impairment of mobility is due to the overgrowth (proliferation) of fibrous tissue in the joints (fibrous ankylosis). There are many different types of Arthrogryposis Multiplex Congenita and the symptoms vary widely among affected individuals. In the most common form of Arthrogryposis Multiplex Congenita, the range of motion of the joints in the arms and legs (limbs) is limited or fixed. Other findings may include inward rotation of the shoulders, abnormal extension of the elbows, and bending of the wrists and fingers. In addition, the hips may be dislocated and the heels of the feet may be inwardly bent from the midline of the leg while the feet are inwardly bent at the ankle (clubfoot). The cause of Arthrogryposis Multiplex Congenita (AMC) is unknown. Most types of Arthrogryposis Multiplex Congenita are not inherited; however, a rare autosomal recessive form of the disease has been reported in one large inbred Arabic kindred in Israel.

This is my reality:

Arthrogryposis is really a term that covers about 150 different variations of those symptoms. Most people with Arthrogryposis can walk a little bit with a walker or walk totally unaided because most types of the condition only affect the arms OR the legs but not both. My case is particularly rare in its sevarity because both my arms and legs are fully affected. I cannot walk at all, nor can I use my hands enough to function in everyday life. I also did not have proper medical care as a child because I was born about five years before doctors figured out the best general course of treatment for this condition. Since this condition affects bones and connective tissue, it’s best to get the brunt of your corrective surgery as a child before everything is fully formed. I missed that window of opportunity in a lot of ways so corrective surgery is not quite as affective on me and it takes longer for me to recover as I get older. All of that is why my case appears more severe than most.

I have lost count of how many surgeries I’ve had. I’m very self-conscious about what I wear because I don’t want people to see my scars. I have two scars each going the length of my hips that are fully exposed when I wear a swimsuit. I wouldn’t take my shorts off on the cruise when I was getting sun by the waterslide because of that. The reason is because I had hardware (literal screws and plates) to try to help my bones because my hips are, in essence, permanantly dislocated. I also have a scar that goes from my neck to my tailbone from a spinal fusion. That means the surgeons wired titanium rods along the length of my spine to correct the curve. The rods start in my lower neck, run down my spine and branch off into my pelvis, so I can’t bend over at the waist like you can. I can only bend at the hips. I also have scars along the arches of my feet from having the bones rebuilt as a baby to try to correct the clubfeet. Those are just to name some of the major surgeries but there are a lot more.

The surgery that I remember the most was my spinal fusion. It was 1989 and the surgery was very complex. The doctors wanted to wait until after I was finished growing because the rods stop you from growing (hence why I’m only five feet tall) but my ribs were growing into my organs and I would have died before I was 16 if they let it go. 1989 was when NKOTB mania was getting pretty big, so naturally I was into them. My mother sometimes brought my little tape player to the ICU so I could listen to Hangin’ Tough and one of my doctors brought a poster of Jon from a teeny-bopper magazine to tape on the wall by my hospital bed. Little things like that make all the difference in the world to a girl who had just been through nine and a half hours of intense surgery and entering into months of bed rest. Little things like that were a sense of home to me in the sterile lonely hospitals, no matter which surgery it was, really.

I need more surgery to correct things that were done when I was a child, back when I was a bit of an experiment for developing the treatments for future generations. For about five years, my feet have regressed back to the clubfoot stage they were when I was a baby. My feet hurt all the time. I don’t wear shoes unless I have to and even then I can only tolerate loose sandals most of the time. I have needed a good orthopedic specialist for years but there are none that I would trust in Tennessee. I was going to see a specialist in LA but that didn’t work out for me, so I’m hoping somebody in New York will know what to do with me. I also have chronic pain in my hips that makes me get Depo-Medrol injections every six weeks when my insurance will cooperate. Depo-Medrol is a combination of a steroid and a pain blocker. They put me to sleep like a surgery and inject the stuff directly into my hip joints – or where my hip joints should be since I really don’t have any. If the Depo-Medrol doesn’t work after some time, then more surgery will be required and will add more scars to my lovely collection.

Despite all of this, I’m a perfectly normal woman. I need help doing some things like getting dressed and bathing but I do a lot more on my own than people think. Since I can’t use my hands enough to call it function, I do things with my mouth. I have the ability to write, draw, type, sew, needlepoint, use scissors, tie knots, etc., etc., etc., all with my mouth. If you do it with your hands, I find a way to do it with my mouth. People often ask how I learned all this and the answer is I taught myself through trial and error. My family never treated me like an invalid so I had to learn to do for myself very quickly. The body’s ability to adapt is amazing when you think about it. People also ask me if I’m like Christopher Reeve, who had no sensation in his body. No. I am not a spinal cord injury so I have full sensation throughout my body except for some numbness in my right hand due to an overzealous surgeon who caused nerve damage.

I live with Arthrogryposis but it does not run my life. My wheelchair is part of me but it is not ME. I have had boyfriends, I have been engaged, I have been pregnant, I have survived abuse, I travel, I have and attain goals, etc. I have the same thoughts, desires and feelings as any other woman. Sometimes I have to adapt the way I do things but I do and I get on with life.

So there you go. A closeup glimpse of life with Arthrogryposis.