Civility

November 5, 2022

As I try to write this blog about my current life, I have a new level of vulnerability and perspective.  The blog has exposed my weaknesses and compelled me to reflect and grow.  Over this month, my attempt to provide awareness.  I have rewritten this a hundred times.  Everyone has challenges to conquer and survive losses.  I don’t know where this blog will lead me or help others.  It takes a community to make significant changes.  I hope to share my awareness from my research and my experience as an upper amputee to help others understand, make a connection, or improve another’s life. 

At the time of my decision to amputate, my goal was to relieve the constant intense pain and instability.  I attained that goal!  I was naive and assumed it would be quick to obtain a prosthesis.  I have been baffled by the lack of products for upper amputees and little advancement in prosthetic components.  The private insurance sector is a complicated approval process with unattainable guidelines for independence with an individualized upper prosthesis.  For these and other reasons, as of today, I do not have a usable prosthetic.

It has been an enormous adjustment to learn to adapt as an amputee.  My insecurity in private and public life is of awkward shock and pity.  The challenges of using my left hand when most products cater to the right-handed.  My left arm is compromised from two surgeries, and doing double duty further stresses and complicates my adaptability. 

My first encounter was fitting for a compression sock after surgery.  There is not one specifically designed 

compression sock for uppers.  We have to modify from the thousands of lower products available.  This is crazy to me.  I needed assistance to wear.  It never correctly fit, caused sores, or rolled off without effectiveness.  I attempted to contact some manufacturers to address the need and market for upper amputee compression socks.  Several manufacturers make compression arm sleeves for sports, lymphedema, and injuries.  The difference needed to modify is a shorter length and end closure.  While healing or not wearing a prosthesis, it would be a fashionable accessory; add some fun designs for pediatric amputees.  A designer stump sock.  Some never responded; a few stated they would look into it.

The next surprise was a prosthetic.  I did not know anyone with an upper amputee; the few I have seen do not wear one.  If they do, it is for a specific task.  Finding a physical therapist, occupational therapist or prosthetist specializing in uppers is challenging.  You walk into a clinic and see rows of options for 

lower products, some really cool stuff.  Nothing, absolutely nothing for uppers. 

I have discovered several clinical studies on uppers in my research.  The Afghanistan war and the Boston bombing accelerated this progress in 2010.  They have made advancements with the hand component but are still expensive, heavy, and not waterproof.  Most private insurance companies will not cover them.  Their denial explanation after the months-long approval process is “considered experimental.” There is some truth to this but far reached.  I have thoughts that are not appropriate to repeat.  How many years?  The elbow component has been around since the 1960s.  The upper extremity that gets wide publicity is called the Luke arm.  I have had the opportunity to work with this beast while participating at MIT.  My impression is, It’s cool but not close to practical and functional for a human and extremely expensive.  Insurance will not cover either.

My first prosthetic was a hybrid myoelectric, a budget model of the fancy Luke arm.  It was heavy, awkwardly bulky, and slow.  It was secured like a backpack.  It was so tight it cut into my armpits and pressed my breasts into four.  To use it, I had to move my shoulder to bend my elbow and move something else to activate my wrist and hand motion.  I immediately knew this was not a benefit to my lifestyle.  It was over $200,000.00.  I opted for a body-powered to allow me to do some two-hand activities.  It is sitting in my closet, worn twice.  I broke the elbow component immediately, and the socket never fit properly.  Now that my stump is pumped with muscle gain.  It doesn’t fit at all.  The cost was $35,000.00.  

Can I adapt?  Absolutely.  We all do this in some capacity in our daily lives.  My emotions get fumed when I struggle to do simple tasks.  Today we build robotics to do much of everything, including surgeries and sending people to outer space.  We can’t improve a prosthetic arm?  

In my google quest, the composite materials today have improved the 21st-century look.  Still, the overall function and components have not.  Are they better?  My experience, no.  The improvements in the surgical technique have made significant improvements, especially mine.  In the previous amputations, they just cut the arm off.  This led to enormous shrinkage from no muscle and tissue activity, and most still battling nerve pain.  My surgery attached healthy muscles, soft tissue, and nerves.  My stump is pumped with nerve and muscle activity with no pain.  The solid socket will not allow for this new muscle contraction.  The 1905 leather socket may be better?  Or better yet, use several materials today with 3D imaging for perfect precision, like the tons of lower sockets.  The elbow is a component that hasn’t changed since the 1960s.  As I delved deep as a study participant.  I related to the sombrero hat effect in a clinical study web article.  In short, It stated that much of the concentration is in lab-controlled studies with little extended participation outside the lab leading to failure in final production.  We should consider a top-hat effect for a better successful product, allowing more feedback and actual life participation for success.  The website is in my resource section if you are curious about the details.  So, why not simplify the system.  Funding is available.  It creates jobs with a market production that leads to profit.  It can be a win-win for all. 

Of course, my tenuous personality is determined to obtain a functional prosthesis for independence.  It is essential with the challenges of my left arm.  The frustrations of doing anything.  It takes longer, or I need assistance with many tasks requiring two hands.  

We have a healthcare system that requires you to advocate for your care.  You add the complexity of multiple severe injuries.  It’s a nightmare.  If not, you are lost in the system.  This is not healthy for anyone.  The frontline staff, including physicians, spend more time dealing with our insurance system’s complex long approval process.  At the same time, they share the frustration of a patient who needs immediate care and can not provide it.  Everyone is losing.  Many great medical people are leaving the industry or are numb.  With the endless daily breaking news, everyone is sicker with mental illness, prescription costs, or delayed healthcare needs and expenses.  The world, all humanity, is in survival mode. 

Today, I am exhausted, mentally and physically.  I am feeling defeated as an individual.  The mental battle, feeling guilty to be frustrated when many more have challenging hardships.  It’s easier to blame or make excuses.  I want it now, or more will make it better.  I know I am not alone but at that moment or day.  It feels so lonely. 

I must reiterate that I am grateful and fortunate in this century to be alive with the injuries I sustained.  I am lucky to have strong support and the means to obtain the best care.  My women’s ancestral legacy, life challenges, and competitiveness give me the strength to keep fighting.  I do feel alone in this battle.  The best therapy that guided me best in life was playing team sports.  The collaboration of all imaginable personalities comes together to make a dream team.  When we all clicked in unity, we were unstoppable.  The differences dissolved, and the whole community rallied.  I need that feeling.  We need that feeling; our future needs it. 

Cliché, I can only do my best.  Be a better example.   

Carpe Diem.