Naive Stereotyping

I was born in 1954 in Kansas (moving to Nebraska shortly thereafter) – in a time and place where mentally and physically disabled people were often placed in a “home,” a facility created for such a purpose.  The severity of the disability also played in the decision.  Apparently, it was felt that these facilities could/would provide the specialized care and equipment that would be needed – care and equipment not readily known or easily provided by the average parent. 

My physical disability was quite obvious at birth.  I had no legs and only one arm.  The doctors didn’t even think I would live (interesting that a missing limb or limbs were a threat to life).  Looking for answers, my parents were advised by the doctors that placement in such a “home” was their recommendation so my father embarked on a journey to find one that would best serve my needs.

The search took him as far away as Boston and many places in between.  I sometimes wonder what my life would have been like had I been placed in one of these homes.  Would have I ever known my parents and eventual 6 siblings?  Would have I graduated from college?  Would have I been employed?  Would have I learned to be independent?  Fortunately, my parents took me home, opting to learn on the fly how to raise a disabled child.

My book, My Extraordinary Life describes my journey.  Despite having only one limb, my life was quite “ordinary.”  From a very young age (crawling), I was expected to do what “normal” kids did.  I was given no special allowances or excuses.  My Dad told everyone in the family, and eventually me, that I needed to try things first, and if I could not do them, I could ask for help.  That turned out to be a brilliant philosophy because I learned to live my life without expecting any concessions.  I believed I could do anything, and I found a way without even knowing I was looking for a way.  I was in college before it occurred to me that others were seeing my life as far from “ordinary.” 

I grew up, graduated from high school and college, learned to drive a car, moved from Nebraska to California, got an apartment, got a medical transcription job, learned to swim, lived alone for many years and then got married – certainly an ordinary life.  My book details the joys and struggles of these events.  It wasn’t always easy.  I would eventually come to realize as well that despite these ordinary accomplishments, the world would always see my disability first.  Predictable, but entirely inaccurate, assumptions about me and my life would persist.  The realization that these assumptions would continue despite my “ordinary” life was a painful one. 

In my book, I provide some thoughts and advice for those who are disabled, those who care for the disabled, families of the disabled, and those who are not disabled.  I provide some valuable tips for children when they see a disabled person for the first time.

I am extremely grateful that I did not end up in a “home” because my life would have been very, very different.  I am indebted to a family who unwittingly executed an exemplary approach to raising a disabled child.  Because of my disability, and perhaps in spite of it, I have learned more than the ordinary patience, empathy, tolerance, and priorities.  It is my hope that much can be realized about disabled people after reading my book.

One should never stereotype because the label or assumption is very likely to be very wrong.  Given the opportunity to be “ordinary,” the disabled can, and often do, reach surprising heights, and they don’t see anything extraordinary about it.  Some roads are winding and some are straight, but both roads can be traveled.  When meeting a disabled person, always remember to think before you stereotype.

One-Handed Gadgets

Living with one hand definitely has its challenges.  For example, try holding a newspaper open with one hand.  Nevermind… no need to try… it is impossible.  Reading the front page is okay but I really dread seeing “continued on next page.”  Many times, I look at the end of the article to see if it is continued on another page.  If it is, I may not even start to read the article.  Placing the newspaper on a table is an option but turning a page is still an ordeal.  One hand is needed to turn the page but another is inevitably needed to make sure the crease stays smooth.  It never does, so this means you must drop the page, straighten the crease and try again.  One try is almost never enough.  In addition, there are multiple pages, and the dilemma is the same.  Suffice to say that reading a newspaper is quite annoying.

While not having found a solution for my newspaper impasse, below are pictures of some useful and handy gadgets for the one-handed user. 

        

  

These 2 pictures above represent extensions taped to a razor and a deodorant bottle.  Note that the handle of an old toothbrush is used for the razor.

I use this bottle washer in the shower.  It is handy for reaching my back and under my arm.  I find these at Target. 

This 2-quart jar with a spigot negates the need for lifting and pouring from heavy containers.

Another personal favorite is this small glass cup for teaspoon and tablespoon measurements.  It's hard to hold measuring spoons while pouring something into them.  I bought it at Walmart.

This is the same idea as above but it also measures ounces.   Found at Walmart.

Dental floss sticks are awesome and can be found almost anywhere, Walmart, Target, drug stores.

Handy shredder though there are various options on this theme, including electric shredders and choppers.  I have seen them at Walmart, Target, and kitchen stores.

This egg-white separator is an all-time favorite.  It securely fits onto a measuring cup.  Upon cracking the egg, the egg white falls into the cup but the yolk stays in the separator.  I got this as a Tupperware item. 

This is non-stick padding.  I use it under anything I don’t want to slip like bowls when I am stirring.  It can be found all over in lots of colors – Walmart, Target, hardware stores, etc.

There are lots of other gadgets but these are the ones I use every day.  I would love to hear from others who have found clever or useful gadgets.  Someone must have an idea for the newspaper problem.  I know the internet, on-line, etc., but it is just the principle of the thing! 

Phantom Pain

Virtually all amputees will experience phantom pain at one time or another.  Phantom pain is the perception of feeling in a missing limb and can include sensations of extreme pain, sharp, shooting or stabbing pain, throbbing, cramping, burning, and aching – basically any sensation in a limb as if it was still attached to the body.  It is considered a nerve-type pain where the nerve endings have become damaged with associated tissue damage.  Impaired nerve endings can send faulty signals to the brain.  For some, it is simply an intermittent annoyance but for others it can be debilitating.  For some, it is fleeting; for others, it is constant.

I had a foot amputated at age 9 and another at age 16.  In addition to the acute postoperative pain, I felt phantom pain almost immediately both times.  It felt like my toes were tied together and no matter how hard I tried, I could not stretch them apart.  More than once, it felt like hot water was being poured on my foot, and I actually looked every time to be sure it wasn’t.  I would reach down instinctively to scratch an itch on my non-existent foot.  To this day, I still experience sharp, shooting, stab-like pains that can easily take my breath away.  If I intently focus on either stump, it still feels like my toes are tied together, and I can’t stretch them apart.

Treatment options exist but usually offer limited and unreliable benefit.   Antidepressant medication, local anesthetics and anticonvulsant medication can provide some relief.  You might wonder what role antidepressants, anesthetics, and anticonvulsants might play but if you suffer from chronic, severe phantom pain, you will try almost anything.  Others have tried hypnosis, acupuncture, nerve blocks, trigger point injections, and even ‘mirror box’ therapy (looking at the reflection of the remaining limb and trying to move the missing limb into a comfortable position). Some find it helpful to wrap the stump in a warm towel or cold pack, change its position, or apply deep massage.  Therapy that works for one may not work for another.  Trial and error is often necessary before finding a treatment that will provide relief.  While treatment of phantom pain is largely ineffective and there is no cure, it tends to lessens over time.

When I had my surgeries, no one told me about phantom pain.  Initially, it didn’t seem odd that I could still feel my foot.  When I was 9, I never mentioned these strange events.  When I was 16, I mentioned them, but people reacted as if I was crazy.  The foot was gone, how could it have any pain?  I first learned about phantom pain at age 20 when I joined Amputees in Motion, an amputee support group in San Diego.  I couldn’t believe that there was actually a name for it and that it was very common.

It is critical to discuss phantom pain with amputees and their families.  It is important to know the facts and understand the options.  While amputees will experience lots of new issues, phantom pain will, no doubt, be one they didn’t expect.

Support groups are available locally and nationally, on the internet and on social media.  I find the Amputee Coalition of America (http://www.amputee-coalition.org) to be especially valuable.

Birthday Thoughts

Today is my birthday.  Sixty-one years ago on September 8, I was born missing 2 legs and one arm.  The doctors told my parents that my internal organs were probably reversed and that I was blind and deaf.  They predicted quickly that I would not live.  Then, after I was still alive after an entire month in the hospital, they recommended that I be put in a home.  Thankfully, doctor advice has advanced significantly since 1954.

It was a lot to consider for my 19-year-old, shell-shocked parents.  Despite the advice and predictions, however, they took me home.  They were given no instructions or playbook on how to raise a disabled child.  Since they truly had no clue what to do, they just acted like I was a “normal” baby.  I asked my mom once about their “strategy.”  She said, “We really didn’t have one.  When you were a few months old, we just put you on the floor to see what you would do, and you took off.”  Sounds a lot like an experiment to me!

Turns out, as a kid I was given no special considerations because of my disability.  I simply had a very ordinary life with the very same expectations as a child with 4 limbs.  I lived with the mantra spoken early by my dad, “Try it first and if you need help, then ask.”  I’m told that I did have a bit of a stubborn streak, so sometimes I would intentionally NOT ask for help, just because.  In hindsight, it was an almost flawless strategy which inadvertently helped me reach my full potential!

There have definitely been, and continue to be, highs and lows on my journey.  Indeed there were many times when I marveled wow and questioned why.

But… today is my birthday, a day that holds special significance to me every year.  I am reminded of my frightened, yet strong, parents, grandparents and extended family.  I am so thankful that I was not put in a home.  I am grateful for my full life and that my one arm is still strong.  I have proven convincingly that the doctors were wrong in 1954.  I do like to prove a point.

Happy Birthday to Me!

Artificial Limbs - Luxury or Not?

In the news today, Medicare is proposing that payment be made for only ONE artificial limb set in an amputee’s lifetime.  What Medicare does, private insurance companies follow.  I have not seen any details, like the age when one becomes an amputee – just a blanket one per lifetime.  While indeed expensive, many amputees consider artificial limbs a medical necessity, much like diabetic supplies or catheters.  To an amputee, they are not totally optional, and new ones are needed as one grows.

I know there are some awesome artificial limbs created today – not only those which allow basic function but those which allow sports and dancing, etc. – individualized to allow as much “normalcy” as possible.  Again, limbs are very expensive.  Still, there is a current, ongoing debate as to whether or not they should be considered a luxury.

As a high double leg amputee, my experience with artificial limbs was just for basic walking.  No frills, just function.  As you will see below, my journey was difficult and expensive.

The sights, sounds and smells of a prosthetics office are unmistakable.  I can still smell the fiberglass – a strong, distinctive odor that many consider offensive.  I spent lots of time in such an office.  During my appointments, I could watch workers sawing, cutting, sanding, or polishing the limbs they were creating.  Their hands, faces and aprons were totally covered in a white powdery material that misted from them as they moved.  And that smell.  No mistaking that smell – over-powering and never changing.

I remember well my appointments at the “Missouri Valley Brace Shop.”  I can still see my prosthetist.  I always had the same one.  He was an elderly (to me!) man with a very kind face, soothing words, and gentle hands.  He was always, always covered in the fine white powder from head to toe.  While it looked white, his full-length apron was gray.  His face, hands and hair were also white except where he had been wearing goggles. A cloud of white dust traced his every move.  He was so soft-spoken you could barely hear him.  He was very kind and gentle as he molded plaster around me – a cradle to sit in to which my left leg would be attached.  Eventually, I was totally covered in hardening plaster from the waist down.  As I lay on the hard table, I slowly felt entombed as the plaster warmed, hardened, and tightened.  I knew I could not move or it would cause them to start over.  I worried every time about how they would get the cast off.  I fretted that the loud “saw” they used would slip and cut right through me.  Eventually my “cast” was cut down one side and I wiggled out of it.  Manufacture of my artificial limbs could now begin.

I had several ‘dates’ with the prosthetics office, but at the age of 9, it was decided that my artificial limbs should be taller because clearly a 9-year-old was taller than a 3-year-old. My limbs would now bend in the middle just like a real knee.  They would be somewhat more cosmetic too, especially since I was a girl.

When I returned for a fitting, adjustments were made with black marking pens, loud shavers and saws.  The brand-new white straps and buckles, not yet showing any sign of wear, were tightened around me.  Half of me was now artificial.  It was hard to imagine how I would move them, let alone walk in them.  I was convinced that these ‘bendable stilts’ were dangerous and that I would fall a lot.  Nonetheless, they stood me up and gave me crutches.  Being taller was a completely new experience.  The floor was so far away.

They took me to a room with a long rubber mat on the floor, going from one end of the room to the other.  There were railings on both sides of this ramp and mirrors at either end.  An attendant held onto a white sheet tie placed around my waist to prevent a fall.  My soft-spoken prosthetist watched each step, carefully watching for signs of rubbing or irritation.  When he was happy with the fit, I began a 3-month hospital stay during which I learned to walk in them.

I wore artificial limbs for most of my childhood and they served me well but when I began a more independent life, they soon became impractical.  This was the beginning of my life in a wheelchair.

I also had an artificial arm for a short time when I was about 3.  Apparently, however, I used it more as a weapon to my younger siblings, so it was taken away.  I tried an arm again in my early 20s but for me, I could function better without it.

Manufacture of artificial limbs has advanced drastically in function, cosmesis and cost since my experience.  In fact, it amazes me what is done today.  Maybe if I were younger…  The process of achieving a perfect fit is still tedious but eventually artificial limb(s) become an integral part of an amputee.

Had I continued with artificial limbs, I would have needed many updates.  I would have wondered why had my insurance company not covered this medical need of mine.

This controversial debate is ongoing right now. Let’s help the insurance companies make the right decisions.  Let’s help them establish parameters that will work for both sides.  They need to hear our concerns and understand better the needs of an amputee.

Send me your comments below.  I believe our conversation will be helpful to those tasked with making these important decisions.

Monica YouTube Right Arm Nub

Keeping a Positive Outlook

When I speak about my book, the number one question from the audience has been, “How do you stay positive with such a significant disability?” When I was first asked, I didn’t have an answer to this very thought-provoking question.  As I thought about it, I could see how life as a triple amputee might look quite depressing.  So I wondered… wow… how did I do it?

I think it helped to be born as a triple amputee and not as a result of an accident or illness.  I just didn’t know any other way.  Whatever I learned to do, I had to do it with 3 missing limbs.  Growing up, I was expected to do chores, etc. that my siblings had to do.  If there was an obvious chore that I couldn’t do, I was given a substitute chore.  There were very few exceptions made for me.  Understandable considerations were made such as my bedroom was not upstairs with the other kids but my dad converted the kitchen pantry into a very small bedroom.  I got to choose the paint color – lavender!  However, I never thought that a downstairs bedroom was an advantage I gained because of my disability.

It never occurred to me that I should have advantages or exceptions.   It never occurred to me that I was courageous, heroic, brave or inspirational.  I just lived a very ordinary life.  Living with a disability is merely a lifestyle, not all that different from anyone else.  You simply learn to do things a bit differently.  I did realize very early on, however, that my attitude would be a fundamental key. 

For example, it was clear that I would occasionally need help; e.g. my high school guy classmates carried me up and down the stairs for some classes.  They were all willing – just anyone who was at the steps at the same time as I was.  They would each grab an arm and walk up or down. We made it fun or funny.  I doubt I would have had such willing classmates if I had a generally disagreeable attitude.  Negativity is nonproductive in so many ways. 

I took some time to think about the question, “How did you do it,” and it is fairly easy to answer now.

1.     I had to be adaptable.

2.     I had to be very patient and extremely tolerant.

3.     I had to make concessions and know when to make them.

4.     I had to perfect the art of compromise.

5.     I had to be determined to accomplish each task.

6.     I had to be content with other people’s biorhythms; e.g. when they could help, etc.

7.     I had to be happy with what I could do and not concentrate on what I could not do.

8.     I had to be creative at finding alternatives.

9.     I had to take perseverance to a new level.

10.  I had to be extremely organized.

11.  I had to be content to watch if I could not participate.

12.  I had to often credit someone else for an idea I slipped them.

13.  I had to make big things small in order to minimize disappointments.

14.  I had to quickly learn how to anticipate barriers, plan ahead for them, avoid them altogether, or make quick-thinking plans for “what if.”

In addition to the above, I credit my grandmother for her constant praise.  She no doubt wondered (worried) a lot about what my life would be like, and I think that prompted her to be extremely happy with everything I did.  As an adult now, I can see how excited, and maybe even surprised, she was at what I accomplished year after year.  It is clear that everything I touched turned to gold in her eyes.  That resulted in her unknowingly giving me a lot of confidence in myself.  I wish we had talked about this because she had a resounding impact on my life.

Another big reason that my circumstances do not derail me is really quite basic. There is, quite simply, no alternative, no choice, no option.  It is imperative to concentrate on what I can do and not on things I can’t do.  Sometimes I do wish I could do more.  Sometimes I am not in a positive or good mood.  Sometimes I do get frustrated.  Sometimes I do think how unfair it is.  Sometimes I do wonder why.  These thoughts can’t last long or they will overtake me.  I must consciously push them out.  I must also keep in mind that my circumstances are no one’s fault so it is unfair to take out my frustrations on anyone else.

Maybe because of my determination and success, others will be driven to do greater things.  No one ever knows how far the “domino effect” will reach.  I may never know who went on to accomplish greater things simply because I did not give up.

Yes, it is hard to be a triple amputee but it is not the worst thing that could happen.  I am grateful for that.