The Dirty Little Secret-- EXPOSED

Last Monday I was horrified by the events that transpired in Boston. Watching the news as the details unfolded, I felt a mixture of outrage, terror and grief. The reports of numerous amputations on the scene made the story personal.

It has been heartwarming watching the world embrace the newest members of the amputee community. Within hours these individuals were flooded with well-wishes, monetary funds were established to provide for their after care, and the peer visitor program was mobilized through the Amputee Coalition. I slept better knowing that these victims were receiving the best services possible and that they would not be traveling the journey alone.

As days passed, my feelings have become conflicted. While I don't begrudge these amputees any of the services or assistance that they are given, their experiences are not representative of the average amputee. According to the Amputee Coalition there are 500 amputations every single day in this country, yet the world seems ready to embrace and support fourteen.

The manner in which the limbs were lost in Boston is horrific and dramatic, but the loss experienced is no more profound nor tragic than the other 486 people inducted into the limb loss community last Monday. Since the bombings, the intense news coverage has exploited every aspect of limb loss with one exception. It is ironic, yet not surprising, that the one issue that has been artfully avoided is the very thing that is disabling the community more than the loss of the limb!

Two individuals with the same degree of limb loss can have profoundly different life paths simply because of their insurance and economic status. Remaining confined to a wheelchair because of inadequate insurance is becoming commonplace, and this is a travesty. In this country, access to quality prosthetics is a privilege afforded to the affluent and those with exceptional medical insurance.

I confront the struggles of individuals trying to access prosthetic care on a daily basis. I have supported and counseled grandparents who made the difficult decision to remortgage their home because seeing their grandson confined to a wheelchair, due to the family's inability to purchase a new prosthesis, was too much to bear. Unrealistic insurance caps established to keep profits high despite further disabling amputees are often exceeded within the first few years after limb loss. A growing child may require a new prosthesis annually, forcing the parents to work longer hours and straining the family unit simply to keep the child mobile.

Under the direction of the American Orthotic and Prosthetic Association (AOPA), the leading trade group for the prosthetic industry, the major manufacturers and practitioners have promised to provide quality devices to all amputees affected by the Boston bombings.  A press release pledged to provide "access to care for uninsured/underinsured amputee victims of the Boston Marathon Bombing to assure that all victims “will walk and run again." While I think it is wonderful that these individuals will never face the lifetime of denials, appeals, mountains of paperwork and the financial strains of the hefty co-pays, this is not the reality for the other 1.7 million people living with limb loss in this country.

The average amputee in this country would never be able to run the marathon in 12 short months, not because they wouldn't be physically recovered, but because they would lack the specialized prosthesis to participate. Sport and specialized prosthesis are considered "luxury items" by the vast majority of insurance companies.   The other 486 amputees will be forced to apply and scrounge for grants and private donations in order to return to their active lifestyle. Inevitably their grant requests will be denied and many will have to wait for years before finally receiving a specialized prosthesis, if they are among the lucky to receive one at all!

The aftermath of the bombings could have been an opportunity to create a meaningful dialog about the unequal access to prosthetic care in this country and the dire need for insurance parity. Instead, the industry has chosen to sweep the "dirty little secret" under the rug, hiding the unsightly struggles from the public. Now instead of witnessing the real life issues of life after a traumatic amputation, the public will be treated to a Utopia version of amputation life where an individual's potential is not limited by their insurance company.

Prosthetic parity is the most pressing issue plaguing the amputee community. Mobility is obtained not only with hard work, perseverance and determination but also by policy writers and insurance adjustors. In this country, the opportunity to ambulate with a prosthesis is not afforded to every amputee. Amputees are being handicapped not by the loss of a limb but by their inability to pay for an adequate prosthesis.

Lifetime insurance caps (many times as low as $10,000) are insultingly unrealistic considering that, according to the Amputee Coalition, prosthetic costs for a person with a single lower limb amputation over five years is $230,000. Many policies have riders excluding bionic and specialized devices, forcing the individual to settle for a device that is inadequate to meet their needs. We need to raise awareness about parity issues, mobilize our resources and in a collective voice scream, "This is wrong. Arms and legs should not be reserved for the wealthy."

Because no tax payer money is involved, Prosthetic Parity pretends to receive overwhelming support from lawmakers. Unfortunately the issue is not a legislative priority due to the relatively small size of our community. We have been in desperate need of a rallying cry, an event that would bring the issue of prosthetic inequality to the forefront so that change can be effected.

The establishment of this coalition is nothing more than an attempt to receive good press and accolades from the American public. 1.7 million amputees will continue to struggle and fight simply because a few industry leaders lacked the gumption and courage to stand up and show the world what life is really like when one is dependent upon a prosthesis. We have traded an opportunity to raise awareness and affect change for a few pats on the back and fleeting accolades.

Update

Since Sunday I haven't been able to escape my thoughts about the lady whom I discovered lying naked in front of her door. While I knew that something was askew, I have been wracking my brain trying to figure out what happened. I have been nervous walking down her cul-de-sac since the incident, apprehensive that I would have raised the ire of the neighbors by calling 911 while anxious to discover any information about her and her unborn baby. 

Yesterday afternoon as I was walking by her house, I saw the door swing open and an elderly man came quickly towards me. He screamed, "Are you the one-legged walker who called 911 on Sunday?" I refrained from any smart aleck remarks and just said yes. Before I realized it, I heard myself launch into a long winded apology about causing a disruption.

He interrupted me by giving me a hug. I learned that the lady has no recollection of Sunday and is perplexed as to how she ended up naked on her front stoop. When the paramedics finally got her to the hospital she was semi-conscious and she was in the throes of a gestational diabetic episode. Her organs were beginning to fail under the stress, but the medical team acted quickly. A C-Section was performed and a healthy (albeit premature) baby boy was delivered.  The new Mom is resting, regaining her strength and her systems are beginning to normalize.

I was so elated to hear that this story had a happy ending that I practically skipped home. I'm so thankful that I happened to be walking by her house and that her dog signaled me to look towards the house. I have no doubt that her canine friend played a large part in saving her life (and her baby's life as well!)

I am looking forward to meeting her and her young son. It'll be nice to know her name so I can stop referring to her as "the pregnant naked lady." I know that she is embarrassed by the incident, but I'm hopeful that a hug and a plate of chocolate chip cookies will help make our formal meeting more comfortable. I am so grateful that the outcome is positive. If I hadn't been walking by or had I not looked up, the situation could have become tragic. I guess now I'm glad I didn't stay on my couch eating cupcakes all day!

Happy Blog-Versary to Me!

This week marks my blog's fourth birthday. It is hard to fathom that my adventure in blogging is now going into its fifth year. I clearly remember that bored Friday night in 2009 when, lacking the motivation to clean or do laundry, I opened up the laptop and decided to start a blog. I had no great aspirations about the venture, but it seemed like a fun idea and way to pass some time. A few clicks later and AmputeeMommy came to life.

Unsure about the format, the first few blog posts are disjointed. It took me awhile to get the feel for the format and to establish my own goals. Once I realized that the blog could become my vehicle to help other amputees by minimizing the isolation that is too often experienced, my blogging wings began to fly.

It amazes me how this blog has become such an important part of my life. It has become more than writing words into a computer. This blog has morphed into an expression of who I am and reminds me of who I want to become. Good or bad, chances are it'll end up in my blog. I have to chuckle because now whenever I have a bad day or a negative experience, my friends and family help to lighten my mood by reminding me that "at least it'll be a good blog."

This blog has taken a lot of time and dedication. There have been many occasions when I have been sick and exhausted, yet I've always found the time to publish a post. I often tell friends that Robby will have the best documentation of his childhood because I have written about all of our adventures. Someday his spouse, or perhaps even his children, will read this blog and will have a humorous and perhaps better understanding of Robby. (Who, in all fairness, will probably prefer to be called Rob.)

My Mom, understanding how important this blog has become, began printing and binding all of my posts. I now have volumes of hard bound copies of the Amputee Mommy blog, printed in multiple volumes. I love looking at the bookshelf knowing that all of the colorful books on the shelf are authored by me!

To date I have written 1117 published posts. Robby has gone from a toddler in diapers to an elementary school student. When I began writing I felt lost, unsure and scared about the future. I am now confident, happy and mentoring new amputees on their journey. I can't wait to see how the next four years develop! In the meantime, I think I'll celebrate this milestone with a cupcake!

Field Trip

Friday was spent chaperoning Robby and his classmates on their field trip to the Air and Space Museum. He was adamant and excited for me to attend which is good because  my skipping the field trip was not going to happen. Since he has been born, I have taken great pains to reorganize my career so that I am available for chaperoning, assorted room mom duties etc.. I consider myself extremely fortunate to have the flexibility to be able to participate in all of Robby's school events, even when that means I'll be spending the day trying to wrangle excited 6-year-olds in a highly stimulating museum!

Dressed in their identifying neon green school shirts, Robby looked adorable standing with his peers. Of course he was standing about 6 inches taller than all of them, a combination of his being tall and his insistence on wearing his cowboy boots. Although they were all dressed the same, it wasn't hard to pick out Robby!

When we arrived at the museum the class was split into two smaller groups. I felt an unexpected surge of pride when the majority of the class wanted to be in my group. At first I thought that their affinity stemmed from my reputation of being a super cool and fun Momom. That was quickly squelched when I heard a little girl lobby to be in my group by saying, "I want to be in Robby's group. He says his mom doesn't have to wait in lines because of her prosthetic. If I am in her group, I won't have to wait either."  So much for my being perceived as cool. The kids just wanted to reap a perk.

Despite my ego being leveled, we had a great time at the museum. Robby was impressed by many of the exhibits, especially the ultra-light plane that was used to help birds migrate. I thought he would be in awe of the Space Shuttle, but the bird plane was the class favorite. I am sure we spent more time reading about and examining the bird plane than we did the Shuttle.

The class attended a seminar about astronauts and (thankfully) they were all well behaved. I was certain that Robby would emerge from the lecture with a renewed interest in becoming an astronaut. A few months ago it was all astronaut, all the time in our house. I prepared to be inundated with space questions from my young little explorers. After trying on space gloves and boots, the group came skipping out of the auditorium and all wanted to go look at the bird plane again. To my surprise they were unimpressed by the astronauts.

During lunch I finally got to the root of the astronaut aversion. The museum volunteer showed the class an astronaut diaper, which is worn during space walks etc.. Instead of finding this interesting, the six year olds found it repulsive. Now none of the previously aspiring young astronauts want to be "spacemen" because none of them want to wear a diaper. They seemed to have missed everything that was said after the diaper!

Despite squelching Robby's astronaut aspirations, the field trip was a success. I had a wonderful time spending the day with Robby and his classmates. I know that someday having me accompany him on a field trip might not be his preference so I plan on making the most of each opportunity.

Walk Adventure

A few weeks ago I was medically cleared to resume my walking routine. Although I'm bummed out that I can't return to the gym yet, being able to walk through the neighborhood has done wonders for my psyche. I have come to relish the "me" time that meandering through the neighborhood affords me. I used to feel guilty about walking by myself, but I have come to realize that I am a better mom and a happier person when I take a little time for myself each day. 

With both boys occupied with various activities, yesterday afternoon I grabbed my headphones and my cell phone and headed out the door. It was chilly (only 50 degrees) but the sun was shining brightly against the brilliant blue sky. It didn't take long for me to become lost in my thoughts as I walked along my normal route.

Turning down the final cul-de-sac, a large dog barking brought me back to reality. I looked up, expecting to wave or exchange pleasantries with a neighbor. At first I didn't see anybody and I continued with my route.

The dog just didn't stop barking! I quickened my pace as I walked by the house, hoping to move out of his territory to stop the yapping, but as I looked over my shoulder, I saw something that literally stopped me in my tracks.

It took a few moments for me to fully absorb what I was seeing, but soon it became clear that I was not mistaken. Lying by the front door of the home I saw a completely naked, extremely pregnant woman. She was curled in the fetal position, but there was no doubt that she was not wearing any clothes. Her arm was pink from the sun, but she seemed oblivious to the large dog barking in front of her. 

I immediately felt a surge of panic. I didn't want to be a nosy neighbor, but the entire situation seemed unnatural. I couldn't come up with one reason a woman would be lying, naked and pregnant, in front of her front door. She wasn't moving and I became nervous.

The large dog kept me from approaching; the last thing I needed was to be mauled by an unknown canine! After a quick call to both my Mom and Scott, it became obvious that I needed to call the police. Something wasn't right, and this woman might be in trouble. I made the call.

Before I made it home, I was passed by police cars and an ambulance zooming down the street. Scott hopped on his scooter to try to gather information. He saw her propped up and covered with a blanket. After about 20 minutes the ambulance left, the sirens and lights providing a clue that she was inside. 

I have no idea what happened to her or why she was lying naked outside. I've been trying to rationalize what I saw, but I can't for the life of me think of a benign reason she would be in that situation. Something was obviously wrong, and I hope that she is okay! Although I hate calling 911, I know that it was probably the best thing I could have done in that situation.

I have been shaky since I stumbled upon this lady. I am worried about her condition and continue to wonder why she was outside naked. So much for my nice relaxing walk. I would have fared emotionally better on the couch, eating a cupcake.