Another Year... A Lot Stronger

Tomorrow is the anniversary of my amputation. Seven years ago today I was desperately trying to stay busy, trying to keep the terror I was feeling from overwhelming me. It was, without doubt, the most frightening decision I was ever forced to make.

One does not make the decision to amputate a limb lightly. I first approached my doctor with the notion of amputating my foot on July 3, 2002 after another unsuccessful limb-salvaging surgery. In many ways it is ironic that exactly one year from when I had that first conversation in my doctors office, I was in the operating room for the procedure.

The twelve months leading up to the amputation was a tumultuous one. My initial approval from the insurance company adjuster was countered with an immediate denial from a higher level official. I was forced to visit two separate doctors and undergo not one but two psychiatric evaluations. Having passed all of my evaluations, the insurance company continued to deny the request and I was forced to go to court.

Sitting in front of a judge, pleading to amputate my limb was a surreal experience. I was angry that such a personal and difficult decision was taken out of my control because of a chart which showed that it was cheaper to medicate into a stupor for the rest of my life instead of allowing me to amputate and move past the accident. I am confident that there is a special ring in hell for those who yielded such power over my medical options. I suppose I am still angry.

The judge released his verdict six days before the date of my surgery. Thankfully he approved the amputation and issued a reprimand against the insurance company. I remember my insurance adjuster calling me to tell me that the surgery had been approved. She informed me that I would be in her prayers. I curtly responded that she need not bother, that I don't want anything from a God that would listen to the likes of her.

The days leading up to the amputation were dizzying and overwhelming. I walked through my routine in a haze. It felt like whenever I opened my mouth I would start to cry. I have never been so terrified. After all, this was one decision that could not be undone.

There is a difference between fear and doubt. I was afraid, but I never doubted my decision. I knew that keeping my limb meant years of painful and involved surgeries, constant pain and medication which was merely keeping it in check but was forcing me to live in a daze. I would never be able to walk without crutches, and I would have to abandon my aspirations of becoming a mother. I was sacrificing my limb in order to save my dreams and my life.

Every year I become overwhelmed with emotions when my anniversary date approaches. The first few years were grief filled. I mourned my leg and all of the time I lost due to surgeries and pain. I used to dread the anniversary.

Now I am entering my eighth year as an amputee. I will always remember wiggling my toes for the last time, desperate to memorize the feeling. I will never forget looking at my leg for the last time in the operating room and saying goodbye. Those memories used to make me cry, but I now find that I cherish those experiences. Those who sustained traumatic amputations were not afforded to opportunity to say goodbye. I am, in many ways, lucky.

This anniversary, like the ones before, I find my mind drifting back to the days before my surgery. I am more reflective, and the pain doesn't seem as intense. I have come a long way in the past seven years. I rarely contemplate what my life would be like if I had not amputated. I doubt that I would be the person that I have become. I would not have had the same experiences that have molded and changed me. I would not know my own strength. I like who I am; I am a strong and confident amputee woman. I am choosing to focus on the positive on this unique anniversary. Maybe, just maybe, I'll have some cake!

King's Island

"There is no place like home. There is no place like home." I'm tapping my heels, but it isn't working. Perhaps my "good witch" that is supposed to transport me back home is shopping or, more likely, drunk somewhere.

This past week we've been in Ohio visiting with Scott's family. Despite having a nice time, it is always stressful staying in somebody else's home, with different etiquette expectations and rules. The issues with my blog certainly didn't help me feel relaxed or comfortable.

We have had a busy week, which has helped ease Robby's and my homesickness. Yesterday we went to King's Island which is an amusement park in the Cincinnati area. I was thrilled that Robby was able to spend the day having fun and playing with all of his cousins whom he sees so infrequently. All of the little ones were so excited and Robby, being an amusement park expert, was eager to teach them about his favorite rides.

When I was at Disneyland I learned about preferential ride access for those who had mobility impairments. I can walk for miles, but I become uncomfortable quickly when I am forced to stand still. My stump becomes uncomfortable and pressure points quickly begin to ache. It is difficult to accept that I now fatigue more quickly when I am standing versus when I am walking, but that is the reality for many leg amputees.

I learned that a line pass is not a universal accommodation at amusement parks. At King's Island I was told by Guest Services to walk and stand as much as I could, and to return when I was forced to use a wheelchair. I didn't press the issue, but I was disappointed with both the demeanor of the Guest Services representative and the amputee unfriendly policy.

In anticipation of Robby's favorite rides, I opted to wear my activity leg in lieu of my Proprio foot to King's Island. Robby loves the log flume ride, which typically leaves us wet. Actually, I am usually the one who is drenched while he merely becomes spritzed. In any case, I wanted to avoid the awkward decision of either removing my prosthetic or trying to wrap it to protect the computer components since the Proprio is not waterproof.

Wearing my activity leg, although practical from the standpoint of ride access, might not have been my wisest choice. The socket is comfortable, but the angle of the MOD III ankle has not yet been perfected. I am still forced forward in my socket, causing my stump to rub on the bone spur/bursa. By the end of the day, my limb was angry.

Last night my stump was doing the jitterbug kick, keeping both Robby and me awake. (We sleep in the same bed at my Mother-in-Law's house while Scott is on the couch.) Robby kept pleading for me to "stop my dancing leg." The stinging and the kicking was relentless through much of the night. Needless to say, neither of us slept well.

A long and fun filled day followed by a sleepless night equals a grumpy little preschooler at Grandma's house the next day. On top of being sleep deprived, my leg is hurting. When all I really want to do is kick my leg off, crawl back under the covers and sleep, I am forced to push on, "act normal" and try to keep Robby occupied and well behaved.

Right now I am sitting on the front porch, watching Robby roll his cars back and forth. I am thankful for the few moments of calm when I can release the pressure in my socket and rest. I'm hoping that my little guy will lie down with me and take a nap soon. If I can't convince Robby to take a nap, Robby Rotten might make an unwelcome appearance in Ohio and I'm not sure I have the stamina to stop him!

Sandal Time

The weather has been hot, even by summer standards. Yesterday evening I packed up Robby and headed off on my semi-annual pilgrimage to the shoe store. My quest: to locate a pair of cute yet functional sandals that I can safely wear with a prosthetic.

In the spirit of full disclosure, I was not much of a shoe collector before my accident. I recognize that most women love shoes and bags. My shoe wardrobe was minimal when I had two feet. I do, however, have several dresser drawers overflowing with pajamas and lounge pants.

Shoe shopping has been a frustrating experience since I became an amputee. Thankfully, my Proprio ankle has simplified the process because I am no longer limited by heel height. I can now adjust my prosthetic to accommodate for a heel height of up to 1.5 inches without visiting the prosthetist. My shoe options have expanded exponentially because of this convenient feature!

Despite the "luxury" of being able to instantly accommodate for various heel heights, I continue to struggle to find shoes. Before my amputation I wore a standard size 8 shoe. As with most leg amputees, my shoe size now differs between my prosthetic and my foot.

Because my prosthetic is slightly longer and wider than my foot, I am now faced with a dilemma. I typically try find a size 8 1/2 shoe that can be loosened so that my prosthetic can be squeezed in. Many times I am forced to put an insole in my right shoe because the shoe is too big. When straps are not an option, which is typical for dress shoes, I am forced to purchase two pairs of shoes so that each foot will have the correct size. I hate doing this, and resort to this option as the last possible resort.

Several large stores are beginning to realize the demand for mixed matched shoes. Nordstrom's and Macy's will now split the pair for the cost of the shoes plus $10. I still hate paying extra for a pair of shoes because I'm an amputee, but it is certainly better than buying two complete sets of shoes to get the sizes I need!

Before I went to my first ACA conference, I mistakenly thought that I was limited to shoes with a back or a strap so that it would remain tethered to my prosthetic. Several years ago I was introduced to the wonders of Velcro. I have been "hooked" ever since.

I now keep Velcro (the rough side) attached to the bottom of each foot shell. I tried putting the loop (softer) Velcro on my foot shell, but it contributed to slipping when I was walking barefoot. The hook side actually has a little grip, providing some friction and improving safety when walking barefoot. (On an aside, I keep the appliques for bathtubs on the foot shell of my water leg so that I don't slip when walking around a pool.)

I place the loop Velcro on the inside of the open back shoe. Line up the prosthetic into the shoe, step down and voila! Because I use industrial strength Velcro, the grip is strong and they only come apart when I do it deliberately.

Before my injury I wore flip flops all summer. I know that I can resume wearing flip flops by cutting a slit between the toes on my foot shell. The notch has to be big enough to secure the "toe thong" on the shoe. Something about taking a knife to my foot shell just doesn't feel right to me, but I know many amputees who happily flip flop all summer long.

Since I discovered the miracle of Velcro and have started using the Proprio, shoe shopping has been simplified. I have a lot more options now and I no longer feel as limited by my prosthetic. I am still frustrated by locating the correct size, annoyed that it is either a struggle to squeeze in my prosthetic or that my foot flops around inside a shoe that is too big. Shopping for pajamas is a lot easier!

Trolls

The past few days have been an emotional roller coaster. Perhaps I have been more sensitive because I was out of my home environment when the events unraveled. I read the most hateful words directed towards me on my mother-in-laws computer. I am sure most can imagine the awkwardness in the living room as I was checking my email to find my inbox overflowing with hate messages. I am not typically a person whom people hate!

My blog on TSA was hijacked by what I have learned are referred to as "Internet trolls." I must admit I think that is an apt description. The anonymity of the Internet lends itself to angry and mean-spirited people.

I was reminded of the negative feedback I received when my three year old nephew was lying in a hospital bed after being struck by a car. Somehow, a troll felt it was an appropriate time to criticize my sister. As I wrote in her defense, I became the subject of their venom. I have not forgotten the words written by "common-tater" and I still fantasize about meeting him someday.

Unfortunately, one of the by-products of living with a disability is dealing with slurs from ignorant people. I have had my limp mimicked in front of me, been referred to as a gimp and told that I was a "drain on society" despite the fact that I do not receive any disability payments etc..

I've lost a leg, but I've developed a thick skin. I am aware of, but no longer hurt by, the stares I receive when I wear shorts. I hear the whispers as my prosthetic is discussed, but I am no longer feel the need to reply. Once I was informed that I will not go to heaven because I am "incomplete." Yes, my name is Peggy and I have lost my leg. Trust me, PegLegPeg is no longer original. At times, being "different" lends itself to becoming the target for judgmental, arrogant and ignorant individuals from both sides of the political spectrum.

I know that these individuals are not worth the breath it would take to make my argument. When my son was brought into the mix and was becoming the victim of the scorn, my "mommy heart" began to break.

I want to believe that most people are good-hearted and well meaning. I have learned that some are not. I refuse to be fodder for their negativity, so I temporarily removed the post. I have not abandoned the effort to affect change. I simply felt like the message was being lost and the situation was imploding. I plan on republishing the post as soon as the trolls move on to their next target.

I have witnessed both the good and the bad in people. Always trying to be the perpetual optimist, I am choosing to concentrate on the positive. I am proud of what I wrote, and I do not regret that I spoke out about what happened to me. I appreciate all of the support I received from friends, family and strangers. I am appreciative and overwhelmed by the support.

I have received harsh emails criticizing my decision to temporarily remove the post. I was told that I was "cowardly and weak." Anybody who knows me would testify that the description is wholly inaccurate. I have survived cancer and an amputation. My strength has been proven and is not at issue.

TSA has been informed of the incident. Agencies are typically not equipped to police themselves, and I am not expecting this situation to yield a different result. I also have received notice that my blog post has been read by both senators and congressmen involved with the agency. To my delight, they expressed outrage.

My story received more press because of the ACA press release detailing the dissatisfaction of amputee passengers. I do not want this information to be lost! This coalition is working towards change, and I am proud to be a part of their efforts.

I am tired of writing about the trolls, but I am not tired of writing!

TSA.. My Message Lost

I started my blog 14 months ago with the goal to reach out and network with other amputees. My intentions were genuine. I remember how I felt as I prepared for my amputation. I was desperate to connect with another amputee woman, to find a mentor, so to speak. My search yielded nothing.

I vowed that, when I survived the surgery and figured this whole limb loss lifestyle out, I would offer myself as a support, a sounding board and a resource to anybody who followed in my footstep. Throughout my blog I have been honest with myself, sometimes to the point of embarrassment. Until today, I have been excited about my blog and sharing my life with my readers.

Today, for the first time, I don't want to write. Yesterday, for the first time, I temporarily removed a blog post. I feel as if my words and my experience has been hijacked. I have been slandered, but it hurts more that harsh and demeaning slurs were thrown towards Robby.

I agreed to work with the Amputee Coalition of America to help gain publicity about the treatment of amputees by TSA. I have flown a lot since my amputation, but I have never had a uniform experience going through security. As any amputee who has flown can vouch, TSA does not seem to have a cohesive, standard approach towards dealing with amputees. Simply put the process varies greatly among screeners and is demeaning.

My horrific experience last month is merely an example of what happens to amputees every day. I agreed to do some television interviews in order to spur reform. My story was picked up and the situation has imploded.

Initially I was thrilled with the support that I was receiving concerning my blog post. I learned that many Americans are unhappy with TSA. I have also been contacted by numerous amputees who have been subjected to similar abuses of power. I thought that the ACA message was being received. I felt as if we were having success.

I was appalled when I read the comments and emails Sunday afternoon. All of a sudden the messages of support and of similar stories changed. I received hateful and highly personal insults. I still do not understand why my blog post, detailing my experience, would cause somebody to write to me calling me a "one-legged whore who should have died from natural selection."

My sweet Robby was referred to a "the retarded kid" and my parenting skills were questioned. I was told that I was "too ugly for a devotee" and that "amputees are freaky ugly." One particularly hurtful comment questioned whether Robby was my child because "who would want to f*ck that freak."

I was tired of reading the comments. I was tired of crying. I felt as if I was fighting a losing battle. My blog post, which earlier this weekend was received by supportive groups, has been turned into fodder for those who just want to insult others. My experience, my message, has been turned into a joke. I have taken down the post in an effort to "cool the waters" and to drop off the radar of those who merely want to hate me because I am an amputee, because I am a woman or simply because I exist. I will continue to write, and I will continue to speak out about amputee issues. I will not be abused on my own blog!