Hell No!

Walking into school yesterday, I was anticipating a normal week. Nothing seemed out of the ordinary, and I was looking forward to a casual, albeit busy, day. As I was leaving the school, the Principal asked me into her office, and I instantly knew that my stress-free demeanor was about to become a memory. 

As she began to speak, I felt like I was witnessing a poor movie. After all, this conversation could not be happening in 2013! Numb and dumbfounded, I was diplomatically informed that a complaint has been voiced about my attire. I was confused because my wardrobe is comprised of conservative "mom-wear" and a few demure work outfits. Other than the occasional stain, I have never worn anything that could be classified as offensive.

I must have looked confused, because the Principal clarified by explaining that the issue was with my prosthesis, not my clothes. A parent, not a student, had actually taken the time to complain about seeing my prosthetic? My immediate response of, "If they find seeing it so unseemly, they should try wearing it!" was met with a flat reaction.

If my prosthesis ever made a student feel uncomfortable, I would jump on the opportunity to educate and enlighten. So many times children are initially uncomfortable simply because a prosthetic is an unknown concept. I never hesitate to tell my story, to let them touch and investigate my prosthesis, and I always find the time to answer their questions. Had this issue originated from a child, it would have been easier to accept. The fact that an adult took it upon himself (I suspect I know who it is) to complain about my prosthesis being visible infuriates me!

Although I don't feel that I should have been made aware of this complaint, I don't judge the Principal. She was in an uncomfortable situation and was probably hoping that I would be the avenue of least resistance. I have been nothing but accommodating and helpful all school year, so it would be easy to assume that I would simply oblige for the remaining six weeks of school. She was wrong!

If viewing my prosthesis is offensive to this individual's sensibilities, might I suggest he not look in my direction. I am an amputee, and that reality is never going to change. It took a lot of courage for me to make my prosthetic visible for the first time. I have absolutely no intention of now covering it up simply to satisfy the ignorance of one arrogant fool. 

Despite the cold temperatures and the rain, I am wearing shorts today. I plan on wearing shorts, or a skirt, for the remainder of the school year. For good measure, last night Robby had a great time applying sparkly crystals and stickers to my socket. I will be a full-on blinged out Amputee Mommy for the remainder of the school year!

Growing Weary

The weekend was relatively quiet which is good because I was in desperate need of some down time. I avoided my natural inclination to stay busy with assorted projects and allowed myself to simply relax. The decompression time provided me with a glimpse of clarity into an issue that requires my immediate attention.  The more I thought about it, the more aggravated I became.

I am fortunate to have a solid support base of wonderful friends and family who celebrate my accomplishments and are always willing to organize a posse to help me right a wrong. Their honesty has helped me grow, and they understand and respect my goals. I would do anything to help my friends, and I know that they feel the same way. 

Unfortunately, it occurred to me that I also have a myriad of toxic relationships in my life. From the Facebook friends whose status updates do nothing more than make me shake my head out of frustration to the real life "friends" who are always critical of my mistakes yet never cheer my victories, at times I am surrounded by negative energy. I am an eternal optimist, always trying to find the silver lining and never wanting to hurt anyone's feelings.

Unfortunately, my desire to evade a conflict often results in my harboring hurt feelings. I find confrontation uncomfortable and tend to avoid it at all costs. Always the consummate peacemaker, I tend to absorb the petty actions and comments of others in order to avoid a negative conversation. I've become adept at letting things roll off my back, but lately I find myself growing weary of fearing the reactions and comments of a few people. 

Toxic relationships exist a personal level, but also can occur in the professional arena. Of course those waters are trickier to navigate, but I feel like I am just beginning to find my way. My desire to keep everybody happy often interferes with my ability to advocate for myself.

I accept my portion of the responsibility for these unsatisfactory relationships. I have been overly accommodating, always willing to lend a hand and work towards the greater goal. I have donated my time and my talents towards various projects without any expectation of acknowledgment or compensation. I fear that my generosity has resulted in the devaluation of my skills and worth. Instead of being viewed as somebody who is a hard working team player, I believe I am being perceived as somebody who is easy to manipulate.

The past few weeks have been both exciting and clarifying. I don't relish the spotlight, but I am honored to have built a platform which I can use to speak for our community. I expect my friends, family members and colleagues to afford me the same courtesies and respect which I offer to them. I am going to be 40 years old next year, and I no longer have time for high school interactions.

My Mentor

On this date in 1903, a special little baby girl was born. This child grew into an amazing woman who, unbeknownst to me at the time, drastically impacted my life. I met Mary Sheffer when I was preparing for my freshman year in college. The meeting turned into a working and personal relationship until she passed away five years later. Although I only knew Mrs. Sheffer for five years, I still feel her presence and benefit from the lessons she taught me.

To say that Mrs. Sheffer was unique would be an understatement. She was an eccentric, well-to-do woman who felt that she had earned the right to be opinionated by virtue of turning 90 years old. She was totally blind, the result of an injury (which by her own omission) she sustained due to being stubborn. Ignoring her husband's directive, she decided to load some wrought iron rods onto a truck. One of the rods slipped and went through her eye socket, severing the optic nerve.

She lost her vision when she was in her 70's and lacking any rehabilitation training, she adjusted well. She lived with her housekeeper (who was 86 at the time of our meeting) and ran small philanthropic ventures. I met her when I applied for a scholarship that she was sponsoring. Her committee did not choose me for the award which angered her and prompted the invitation to her home.

Several times a week during every college break, I worked for Mrs. Sheffer. Lacking any secretarial skills (I couldn't even type at the time), I struggled with the duties that I was assigned. Thankfully she was patient as I fumbled my way through the filing, typing and organizing that she relished.  I enjoyed spending time with her, but I hated the work!

During our visits Mrs. Sheffer and I forged a unique relationship. Slowly, she became a mentor. She was quick to remind me that answering "yeah" was incorrect and unacceptable. She loved reviewing parliamentary procedures and insisted that I speak with correct diction at all times. Without ever seeing me, she managed to shape me into a poised young woman.

Typically it is easy to look at somebody who has passed with rose colored glasses. Mrs. Sheffer dramatically shaped my life, but she was not always an easy person. She has been gone now for 17 years, but I don't think I'll ever meet another woman who was more cantankerous or opinionated. Two examples leap to mind when I remember her.

One Thanksgiving I made an apple pie and surprised her. She called me later that evening and, after politely commending my efforts, informed me that she was arranging for me to take pie making courses because my pie was not good. I obediently attended pie school, only to have her fire the master pie maker because she thought her crusts were too tough as well!

When I was a senior in college I was dating a foreign exchange student from England. During break I took him over to introduce him. Later that afternoon she phoned and asked to speak with him. She proceeded to yell at him for five minutes because she found his accent offensive and difficult to understand.

Mrs. Sheffer, with all of her opinions, did not mean any harm. She was well-intended, even if her approach was socially unconventional. Insisting that age had given her the right to speak mind, she was unapologetic about her comments and her decisions. She exuded confidence.

Today is Mrs. Sheffer's birthday. She frustrated me and one more than one occasion brought me to tears. She also taught me how to remain confident when you feel like falling apart. I wish she had lived long enough for me to realize this lesson, and for me to thank her for taking me under her wing.

Sudden Interest

If there is one silver lining to the Boston bombings, it would lie with the increased awareness and interest in limb loss. I have received more media requests for interviews and comments during the past two weeks than I have in the past year. All of a sudden, it feels like everybody is interested in amputees!

I have been doing my best to parlay the interest about amputees into a discussion about prosthetic parity. Although I am not always successful switching the tone of the interview, I believe that this new exposure is the best opportunity to bring the issue of insurance fairness to the mainstream consciousness. I'm hoping that the small blurbs that are often written referencing the cost of prosthetic devices will somehow spark a debate. I am the hopeless optimist.

When I received an invitation to meet with my local Congressman who was interested in learning more about amputees and prosthetics, I jumped at the opportunity. Thankfully the meeting was scheduled for yesterday at 10:00. I breathed a sigh of relief, comfortable with the fact that I could drop Robby at school and make the appointment with time to spare.

True to Murphy's Law, Robby woke up Wednesday morning with a fever and cough. I avoid calling Scott when he is at work, but yesterday I made an exception. Recognizing that this was an important opportunity, Scott didn't hesitate and immediately made arrangements to come home. With Robby quasi-comfortable and secure in the knowledge that he was with his Daddy, I managed to make the appointment on time.

I was delighted that Congressman Frank Wolfe was so interested in the issues of our community. He listened intently, asked informed questions and verbalized his willingness to assist. I am delighted that the limb loss community has a new ally, and I'm hopeful that we can begin creating some meaningful dialogs. I left the meeting feeling a renewed sense of optimism and an excitement about the future.

After coming home and briefly checking on Robby, I ended up locking myself in the computer room to participate in an interview with a producer from the HuffPost Live. I was delighted by the invitation to become a panelist in a roundtable discussion concerning limb loss issues. As soon as I hung up the phone, Scott and I began to frantically clean the computer room in preparation for the video discussion group which was scheduled to film in two hours. (Okay, perhaps claiming to have cleaned the entire room is not entirely accurate. Our efforts were limited to setting up the web camera and hiding or moving everything that was untidy in the background.)

I've never participated in a video roundtable, but I have to admit that I thoroughly enjoyed the experience. Although I was initially nervous, I quickly felt like I was chatting with friends. The other three panelists had diverse backgrounds and experiences, but we all shared the commonality of living without a limb. In case you missed the show, the video is at the end of this post.

Yesterday was busier than normal, but highly satisfying. I'm learning to embrace the opportunities and adventures that come my way, knowing that this  interest in amputee life will quickly wane. In the meantime, I'm going to keep trying to spread the message and educate as many people as possible.

The Perfect Fit

Have you ever worn sneakers past their prime only to realize the fact when you slip into a new pair? All of a sudden your feet are cushioned and supported, forcing you to realize that you had slowly gotten accustomed to the deterioration of the worn pair. This is the same experience I had yesterday only instead of a pair of shoes, it was my socket.

When I received my prosthesis for my MOD III four years ago, it was the perfect fit. Over time, and especially since the fall in November, my once custom fit device morphed into quasi-comfortable. I didn't realize how many small accommodations I was making during my daily routine. From stopping to release the pressure valve each time I sat to realigning my leg throughout the day, the little adjustments were becoming part of my life.

My limb changed slowly over the years, and apparently I naturally adjusted to the changes. It wasn't until I stepped into my new socket on Monday that I recognized how uncomfortable my leg had become. The difference is marked, and I'm shocked that never noticed the inadequacies of my other socket. 

Compared to my previous prosthesis, my new socket has a visibly different shape. Elliot (my prosthetist) was able to flare out the walls to protect the developing neuromas and to channel the inflamed nerves. I stepped into the new prosthesis and felt the instant realization that I was not in pain.

Although I can't pinpoint exactly when it happened, I have been struggling with an uncomfortable socket for some time. Suddenly being presented with a device that caused no discomfort was euphoric. My love of walking has returned because the socket no longer causes agony! 

From now on I am going to be more cognizant about limb changes. Just like any item that receives heavy use, sockets and prosthetic components do not have an indefinite life. Next time I find myself making those small adjustments, I'm going to go straight to my prosthetist for a fit check. 

Hockey Mom

Last winter, after watching a Capitals hockey game with Scott, Robby asked if he could learn to play hockey. The protective mother in me immediately nixed the idea, but Scott seemed eager to see his little boy on the ice. Battling back all of my coddling instincts, I researched youth hockey leagues and discovered that Robby would need to pass basic skating competencies before he could join.

Doubting that he would remain interested for more than a month or two, I enrolled him in ice skating classes. Robby was upfront with his instructor at their first meeting, explaining that he needed to learn how to skate so that he could play hockey. She explained that he would need to pass four skating classes in order to demonstrate competencies in the required areas.

Undeterred by the work involved, Robby stepped onto the ice to begin his lesson. During the past 14 months we have seen him struggle and triumph. He had to repeat the second course because he wasn't able to complete all of the skills. Instead of becoming frustrated, he simply kept trying. He never gave up, and he never complained. He remained steadfast in his goal of playing hockey.

Last Monday, after finishing the obstacle course designed to test his skill level, he received the news that he has been working so hard to hear: he has finally been approved to begin hockey. To say that he was proud of himself would be an understatement. He was downright beaming!

Fully padded with all of his newly purchased hockey gear (thank you, Nana), Robby practically floated on the ice. I don't think I've ever seen him as excited as he was when he introduced himself to "Coach Sam."  With Robby smiling from ear to ear, Scott radiating "That's my boy" pride and my wiping away my the unscheduled tears of joy as I watched my little boy achieve his goal, we must have been quite a sight for onlookers.

If our emotions didn't tip our hand to being novice hockey parents, Robby's attire certainly did. Neither Scott nor I have ever played hockey, so trying to pad him up was a confusing. We thought we had dressed him correctly, an illusion which was quickly destroyed the first time he fell on the ice. The hard plastic of his knee pads slid against the smooth ice, forcing him to contort into a series of splits and face plants each time he tried to stand after a fall. Coach Sam came over in the middle of practice to talk with us, suggesting we put the pads under his pants for the next session.

Despite the uniform mishap, I am overwhelmed with the pride that can only come from seeing your child accomplish a dream. He worked so hard to earn the opportunity to play that seeing him all geared up erased all of my hockey apprehensions. I think I am becoming a hockey mom, and I couldn't be happier.

Great Weekend!

This past weekend was a whirlwind of excitement. Saturday was Show Your Mettle Day (formerly known as Strut Your Stuff Day). Although I'm ecstatic that the event has been adopted and rebranded by the Amputee Coalition, I have to admit that the movement will always be Strut Your Stuff in my heart!

It was heartwarming seeing amputees from across the country proudly posting photos of living with limb loss. One needs only to take a quick peek at the photo gallery that has been assembled on the ACA Facebook page to realize that life does not end with the loss of a limb. The possibilities for a happy and exciting life are limitless. 
 
As part of the celebration for Show Your Mettle/ Strut Your Stuff, I was honored to be part of an article published on CNN.com about the growing movement. The author did a wonderful job covering the story, and I must admit that I was humbled by her descriptions concerning me. I felt a sense of euphoria as the link opened, revealing one of my favorite photos of Robby and me.  In case you missed the story, you can read it here.

The national attention was an honor that I will always cherish.  I began writing with the goal of reducing the loneliness and isolation that many new amputees feel, but my experiences compelled me to add another goal to my vision. I believe that every amputee has the right to utilize a quality prosthesis regardless of his or her socioeconomic status, and I plan on continuing to push for prosthetic parity.

While I'm hopeful that I can continue to bring attention to this pivotal issue, I also recognize that change occurs slowly. Everybody involved in the prosthetic industry, from patients and prosthetists to doctors and manufacturers, needs to mobilize and continue to pressure our legislative bodies until change is affected. Relatively speaking we are a small group, but we must assemble our resources and work together.  I believe all society benefits when every amputee has equal access to prosthetic technology!