Going to Orlando!

After a few snags and some shuffling of plans, I am delighted to announce that I will be representing Ossur at the Amputee Coalition National Conference this year. This conference is, by far, my favorite event to work. Although my days will be occupied in the confines of the booth, I always leave this event with a sense of renewal and optimism. Imagine how I would feel if I actually attended a seminar or educational activity!

For me, this conference is about empowerment. For a few days at the end of June, I will be one of many instead of "the only one." It is refreshing to be surrounded by others in the amputee community. My prosthesis may garner attention, but it simply because the onlooker is comparing devices. In one month the hotel will be taken over by the limb loss community, rendering the four-limbed to minority status.

I have often remarked that the best thing about living life as an amputee is the community to which I now belong. At the conference, it is the norm to see prosthetics whipped off in the midst of a discussion to point out components and to troubleshoot issues. I don't have to explain the feelings that arise from a "bad leg day" nor do I have to try to minimize the aggravation I feel when the phantom big toe begins to twist. It is wonderful to be completely understood without trying to provide flowery descriptions of the elusive pains and frustrations that arise from living with an amputation.

Unfortunately Robby and Scott won't be joining me at the conference. I was hoping that they would be able to come because I think that they would both benefit from attending. Robby would especially love meeting with other children and sharing stories. Of course, the fact that the conference is held at Sea World this year would have been enough to blow his little mind! Can you imagine my little fish and koopa lover at Sea World? He won't make it this year, but I'll certainly scope out the area out as a potential family vacation in the future.

Although I'll be working in the booth for the duration of the conference, I'm looking forward to seeing friends and to meeting those whom I have come to know via the internet. It will be exciting when I finally get to hug friends whom I care about yet have never met! If you are going to the conference next month, please swing by the booth and say hello. Maybe I can take a break and grab a cupcake with you!

Padded Up!

Scott grew up playing baseball and basketball; I spent countless hours in the spring and summer playing softball. When Robby was born, we both assumed that he would naturally follow suit and play baseball. As soon as his personality began to manifest, it became clear that we were not dealing with a traditional little boy. When we asked Robby what sport he would like to try, his answer was resounding and has been consistent: ice hockey.

It has taken Robby a long time to take the ice as a hockey player. He took lessons for over a year in order to gain the requisite skills to play. Finally, after hours of hard work and practice, he was approved to enroll in hockey lessons.

Last week we finished buying the full ensemble of padding and protective equipment. Robby was delighted to finally have all of the pads that the "big kids" wear. Dressed in his prized gear, we were ready to pile into the car when he asked if he could go show Mr. Bill his hockey uniform. As soon as I agreed, Robby was out the door, fully padded with his stick in hand.

Mr. Bill seemed duly impressed and oohed and ahhed appropriately. Robby handed him his stick and asked his friend to hit him in the shins to prove that it the pads worked. Bill obliged and gently tapped his leg with the stick. Robby then asked Bill to hit him in the back, his elbows and his head. I'm sure that the rest of the neighbors would have been perplexed to see Bill hitting Robby repeatedly with a hockey stick, but in this situation, it seemed completely natural!

Thankfully Mr. Bill did not honor Robby's final request. Out of all of his newly acquired equipment, Robby's cup ranks among his favorite. I had to keep from laughing when he begged Mr. Bill to hit him in his "private area."  Bill protested, but Robby assured him that he was wearing a special protector and that everything was snug and safe. It was fun to watch Bill, who is normally so confident, squirm.  I decided to intervene in the little show-and-tell demonstration and instructed Robby to get into the car for his lessons.

It is a good thing that Robby was fully padded for last night's lesson because he was inadvertently checked into the wall by his instructor. My heart jumped and I I shrieked when I saw my little guy become squished before falling hard onto the ice. It's a good thing that I could see him smile from across the rink because I was ready to sprint onto the ice to help him up.

After standing and shaking off the fall, Robby skated over to the side of the rink to speak with me. I asked him if he was okay, and he smiled from ear to ear.  "Momom, you need to chillax. Did you see me get pushed into the wall? It was awesome! It's a good thing I'm wearing this cup. I didn't feel a thing!" I wish I could wrap him in bubble wrap, but I guess I'll have to settle for the assorted hockey pads and protective gear.  Obviously I need to work on becoming a relaxed hockey Mom.

The Birthday Blues

Typically I look forward to my birthday with the eagerness of a child. Perhaps the excitement of the past week caught up with me, but this year I felt humdrum about the entire day. I didn't feel excited or happy about turning a year older, rather I found myself feeling disconnected. Instead of enjoying my special day, I spent the hours waiting for it to be over.

I'm not upset about turning 39, although to be completely honest the prospect of turning 40 does not amuse me. I have accepted that I am middle aged, but I also believe that my best is yet to come. My 20's were spent in and out of the hospital as I battled constant pain. My 30's were spent adjusting to living life as an amputee and navigating the minefields of motherhood. I feel like I am now beginning to know myself and I look forward to the adventures that will come my way.

With two trips into Washington DC and an appearance on a nationally syndicated radio show, last week was exceptionally busy. I was running on adrenaline and it was a matter of time before I came crashing down. Unfortunately, I began the descent on Saturday and by Sunday morning, I had thoroughly crash landed into reality.

Between balancing my new professional adventures and trying to handle several personal family issues, my birthday was less than climactic. It felt disingenuous to feign excitement when I was overwhelmed with sadness and worry. I tried to feel festive, but the mood never materialized.

I assembled a lasagna on Saturday night so that I had minimal cooking on my birthday. Robby and his friend baked me a cake which looked odd but tasted better than anything that I could have bought at a bakery. The highlight of my day was reading all of the birthday wishes that were posted to my Facebook and Twitter accounts. It warmed my heart to know that so many people were thinking of me and wishing me happiness, even though I pretended that it was just another Sunday at home. 

Wrap-Up

Being on the Diane Rehm show yesterday was a memorable experience. Thankfully, Scott took off work to escort me into DC because, let's face it, navigating the Metro and the city streets is not my strength. I was happy for the extra set of hands to get Robby ready for school allowing me the opportunity to primp and to go over my talking points one more time. Unfortunately, I failed to notice that Scott dressed Robby in his dedicated fence painting shirt (riddled with droplets of dark brown wood stain) and a pair of dark blue pajama shorts which were chosen because they "looked comfortable." If the school has a problem with my showing my socket, I'm sure they were offended by Robby's attire!

After dropping my little pajama wearing boy off at school, we hopped onto the highway and headed towards the Metro. I tried to keep my nerves calm, and the fact that I didn't vomit or cry is an indication that I was at least quasi-successful! True to the internet schedule, we arrived at the station on time and had 30 minutes to spare before the show went live.

As soon as I sat down in the studio, put on the headphones and the little light above the host flashed "on air," my anxieties began to fade. I tried to pretend like I was talking with a friend who was interested in my life. For the few opportunities that were provided for me to speak, I think I was successful.

While I am pleased with how I portrayed myself and the community, I was disappointed by the tone of the show. I was hoping that we would have been able to explore the availability and financial constraints that purchasing bionic technology places upon the amputee. Unfortunately, the DARPA arm was a source of fascination and monopolized the majority of the conversation. I was never provided with an opening to address any of my well-honed talking points.

As it turns out, this show did not make the inroads towards obtaining equitable access to prosthetics that I had hoped, but it wasn't because of my lack of trying. I attempted numerous times to bring attention to the issue of insurance fairness and the cost prohibitive nature of these technologies, but I wasn't able to redirect the conversation. At least I know that I made a good effort towards starting a conversation. I'm going to keep trying because one of these days, somebody will listen!



In case you missed the show, you can watch and listen on this link.

http://thedianerehmshow.org/shows/2013-05-16/scientific-advances-prosthetic-limbs

On The Radio

For the past few months I have been podcasting with a fellow amputee. Although I think that our discussions are both enlightening and entertaining, I have been hesitant to promote the venture because of one small issue: I absolutely hate the way my voice sounds on recordings. As it turns out, I am much more comfortable hiding behind a keyboard!

Today I am moving outside of my comfort zone, and although I'm uncomfortable, I also realize that I can't hide from opportunities because of my fear. Earlier this week I was invited to be a guest panelist on the Diane Rehm radio show (syndicated nationally through NPR). Although I was thrilled by the invitation, it's safe to say that I haven't slept well since the plans were solidified.

I have done numerous television and print interviews over the years. Although I always feel a surge of anxiety when meeting with a reporter, I have always been able to rally and squelch my fears. Today is my inaugural radio interview, and the new format has thrown me for a loop!

I know how to tell my story and how to speak effectively to topics impacting the community. I am passionate about the topic of today's broadcast (prosthetic technology and its availability to the civilian population), and I know that I am both experienced and well-versed with the details. I don't doubt my competence, but I do worry that I'll become nervous and tongue-tied as soon as the broadcast starts.

The way I sound resides at the top of my worry list for today. I've been promised that my own negative perceptions of my own voice are not echoed by others. Despite hearing these reassurances, I have spent the past few days trying to improve my sound. Unfortunately I have only managed to uncover an uncanny ability to speak like a cross between Daisy Duck and Porky Pig, with an accent that has never been identified by a linguist.

At the urging of my family and friends, probably because they are tired of my calling them in order to practice my refined dialect, I am waving the white flag when it comes to the way my voice sounds. I am going to have enough anxiety making sure that I communicate effectively. Although it would probably be wildly entertaining, trying to add "change my voice" to the list of things remember during the interview is a recipe for disaster!

I'm excited about the opportunity to represent the civilian amputee population. The show is being broadcast live at 11:00 today on NPR stations nationwide and I hope that you can tune in and cheer me on. Wish me luck!

http://thedianerehmshow.org/shows/2013-05-16/scientific-advances-prosthetic-limbs

Anxiety

Robby only has 25 days of school left. The fact that I am counting down should be an indication about how eager I am to put this school year behind us. Ever since I was asked to cover my prosthesis, I haven't felt comfortable walking into that building. In my opinion, Robby's school is one of the last places I should feel unwelcome, yet now my anxiety begins to rise each morning and afternoon when I know that I have to enter those doors.

I have stood my ground, wearing shorts and a smile each day. To onlookers I have tried to exude confidence. Inside, I feel like cowering and hiding in the corner. I find myself analyzing each conversation, no matter how benign and casual, paranoid that I am speaking with the individual who finds my prosthesis so offensive. I am tired of feeling critiqued, and I can't wait to leave that school for the final time!

I wish that I actually felt the confidence I have been portraying, but for right now all I can muster is pretending. Part of me feels like a failure, that I should be far more comfortable within my own skin (albeit carbon fiber), and that I shouldn't care what the naysayers believe. Deep down, I am hurt that something that is part of me is viewed as a monstrosity that should be hidden from view.

Despite the anxiety, I have no plans to abide by the request to cover my leg. I will continue to wear shorts, hold my head up high and smile broadly at everybody who looks in my direction. Knowing that I am more than the part that I happen to be missing, I will quietly make my stand. Hopefully as the 25 days tick by, I will begin to fully embrace all of the confidence that I am trying to demonstrate!

Time to Correct

I have been loving my new socket. It is wonderful to wake up in the morning, slip on my leg and know that it isn't going to hurt when I take the first few steps. The absence of the little aches and pains in my limb has been liberating.

Walking through Kohl's the other day, I glanced an image of myself walking in a display of mirrors and I was horrified by the reflection. My limp was atrocious! Obviously I had picked up some unfavorable habits during the past few months. I realized that if I didn't correct the issue now, it would only become more ingrained and difficult to change later.

Seeing myself walk, coupled with receiving my new leg, has spurred me on to reestablish a correct gait pattern. In an attempt to mitigate the discomfort I was experiencing, my walking style had become compromised and disjointed. It feels like every aspect of my walking was impacted by my socket pain. My stride length has become uneven, and I have noticed the tendency for me to lift my leg and swing from my hip rather than bending my knee. Although it is easy to rationalize the reasons these habits, I also realize that I need to force myself into a less sloppy walking style.

Every day I have been going for a long walk through the neighborhood. With each step I concentrate on the mechanics of walking. Usually an escape from work, my afternoon walk has been transformed into a self-directed physical therapy session. Needless to say, they have become anything but relaxing!

Still conscious of each step, I can tell that my efforts are yielding results. Yesterday, in order to gauge my progress I videoed myself walking. I still have some tweaking to do, but my limp is nearly gone.

I've learned two valuable lessons during the past month. First, I need to better assess my socket fit and stop accepting the little inconveniences as "part of amputee life." There is no reason I should be settling of anything but a perfectly fitting socket. Secondly, I am going to have to reevaluate my gait on a regular basis. Bad habits are sneaky and become part of my natural style without my realizing it. Being aware of my patterns by objectively watching myself periodically will hopefully help to mitigate future habits from forming.