Dating With a Disability, Part 4 of 5

Though the issue of what others thought remained unresolved, Mike and I could not be separated very long.  We got back together and continued to see each other without announcing it to anyone.  We always had a great time.  We talked on the phone almost nightly.  However, if the subject of marriage came up, he persisted with his mantra that we would never get married.  He finally asked what it would take to convince me of this.  Very flippantly, I said, “You will either have to marry someone else or die.”  I was becoming quite impatient with his logic now.  Decision time was here for him.

Incredibly, Mike’s decision was to marry another woman he had known for exactly 3 months.   He drove down from Los Angeles to tell me.  This was one of the most difficult nights of my life.  Later I learned it was very difficult for him as well.

He reasoned that this was the only solution, the only way for me to move forward and forget about ‘us.’  On some level that was true – in my heart I knew our love was strong and that he truly believed this was the only way for us to move on.  However, I wanted some answers.  I was very angry and hurt and did not understand.  I asked many questions in rapid succession, giving him little time to answer.  “Why was this happening?  Do you love her?  How can you possibly know you want to marry her in such a short time?  I thought you were never getting married!”  Everything he said sounded so trite and he knew it.  Finally, I blurted out the hard question because I needed the answer.  “Is this person easier for your parents to look at or accept into the family?”  With his head hung, he hesitated briefly before saying, “Yes.”  At least he was honest.  I told him that was ludicrous and that he was making a huge mistake.  On some level, he knew that too.  Within the hour, he was on his way back to Los Angeles.

My world shattered.  Everything I thought I knew was compromised.  How could I have been so wrong?  How could have I been so ignorant to think it was at all possible for me to find a husband?  What else had I been ignorant in thinking?  Devastation overwhelmed me.

Five weeks later, on New Year’s Eve, Mike got married.  Several compassionate friends came over and sat with me on this tumultuous day.  Once the tears started, they would not stop.  I cried until I absolutely could cry no more.  My friends joined my pity party, listened all day to my epiphany about the unfairness of the world, how stupid I had been, why me, poor me, etc.  Every few minutes, I would place myself in Mike’s world and wonder what he was doing.  My heart ached like it never had before.

Needless to say, my outlook on life took an abrupt downward turn.  I no longer believed that my attempts to be “normal” mattered in the slightest or were worth any effort.  After all, my missing limbs had already cost me a well-deserved promotion and the only man I ever loved.  I could not muster any more fortitude, strength or determination to cope with ordinary daily struggles.   My positive attitude had been gravely wounded.  Pessimism was consuming me.

I thought about Mike every day, constantly.  One day, I became obsessed with depressive thoughts during my drive down the Pacific coast.  I envisioned driving into the ocean.  I wondered if my van would get stuck in the sand.  I wondered how long it would take for my van to sink.  Was this suicidal ideation?  I didn’t care.  Still a faint voice in my head kept nagging at me, “If you change your mind, how will you get back to shore?”

So…just in case this dilemma presented itself again, I signed up for swimming lessons at the YMCA.  I was so very deathly afraid of water so I reasoned that for at least 1 hour a week, my focus would go from ruminating about Mike to making sure I didn’t drown.  It worked!  I learned how to swim.  The deep end, the shallow end – it didn’t matter.  I could not reach the bottom of the pool at any depth.  I was sure I would never float, but I was wrong.  It took a while to turn from front to back and then back to front but eventually I got the hang of it.  Swimming with one arm propelled me in a circle and it took some time to use force that matched the shorter arm so that I would go forward.

I began to look forward to my swimming lesson and the 1-hour break from the Mike heartache each week.  Unfortunately, there were still many hours in the day.

Dating With a Disability, Part 3 of 5

Our relationship had gone to the next level – Mike invited me to meet his parents.  One Sunday afternoon, we joined his family for a picnic in the park.  In attendance were his father, mother, brother, 3 sisters, a brother-in-law and 7-year-old nephew.  Although everyone appeared friendly, I felt instant discomfort and intense scrutiny.  Afterward, I learned that his parents would not and could not tolerate me as their son’s girlfriend.  Once out of my presence, they voiced their anxiety, questioned his judgment, and “forbid” him to see me again.     

This was extremely difficult on Mike.  We had already processed together that there might be complications of us dating but he was not prepared for their extreme negative reaction.  He also held a high-level position as the building engineer in charge of many departments in the construction of high-rise office buildings.  He became apprehensive that his employer would have the same reaction and question his ability to make good judgments.  Ultimately though he worried about the toll these reactions it would have on me. 

I could tell Mike was struggling.  He was not prepared for his parents’ reaction, and it hurt him deeply.   I explained that their reaction was not all that unusual really.  I told him that I was confident his parents would accept and like me once they got to know me.  As far as I was concerned, his job would pose no issue at all.  Despite my efforts, however, Mike was not convinced.  He began to withdraw.  Our dates went to every other weekend and even longer. 

Shortly afterward, Mike announced to me that he intended to never marry even though that subject had not yet come up between us.  His focus had clearly shifted to protecting me from the prejudice he blamed himself for causing.  The option to date around was proposed.  He theorized that since I had limited experience in the dating field, I was rather unqualified to really know who or what I was looking for in a life partner.  He was quite creative in his efforts to convince me that he had lost interest in us.  I did not believe him – not for a minute. 

Despite his proclamation that he would never marry, Mike and I continued to see each other off and on for several more years.  He no longer spoke of me to his parents, and they seemed satisfied that we had broken up.  Unfortunately, however, Mike had also convinced himself that marrying me was not an option and he often reminded me to date other people.  I saw no logic in this – his actions and his words were so different. 

Still, Mike thought it best that we break up so I could move on and forget about him.  So we did.  I was miserable.  Mike was miserable too but he honestly believed that this was the best thing for both of us.  I understood all too well that he alone had to come to terms with the reactions that his family and others would have about us.  I also knew we were hopelessly in love so I tried to remain optimistic that we would be together again. 

During this particularly painful breakup, Mike’s mom called me out of the blue.  It had been many years since I saw her in the park.  The call frightened me.  She quickly got to the point and very deliberately asked if I knew what was wrong with Mike.  She wondered if I knew why he had become so withdrawn and depressed and never visited his family anymore.  My heart ached when I heard this.  “Yes, I know the answer,” I told her.  Trying to hold back tears, I said, “Mike is withdrawn and depressed because we broke up.  He believes this is necessary because of negative reactions to our relationship.”  Very matter-of-factly, his mom replied, “Yes.  It is for the best.  We can all accept you as Mike’s friend but we cannot accept you as Mike’s wife.”  It was as if she didn’t even hear me.  I spoke a little louder as I said, “If Mike and I are meant to be together, it will happen no matter who thinks what.” 

During the time we were apart, I took the opportunity to date around as Mike had insisted.  It was the early 1980s and I joined the free-loving crowd and became a bit “adventurous” in the dating world but nothing came of any of these one-night stands.  After all, I had no intention of dating other men.  I did not want to date around.   I would never understand how this sexual freedom could be helpful to my relationship with Mike.  I did not desire anyone else.  I told myself over and over that I had to be patient until he came to terms with the fact that he wanted me.

Dating With a Disability, Part 2 of 5

Mike arrived as promised.  He drove a silver Datsun 240-Z.  Impressive.  He shared with me the pictures he had taken at our dinner dance.  He did great photography work, and I learned that he had a dark room in his home.  I learned that he was a stationary engineer and head project manager for the construction of high-rise office buildings in Los Angeles and San Francisco.  He seemed very intelligent.  I was riveted to the descriptions of his work responsibilities and I was very impressed at his knowledge.  It seemed like he could fix anything – plumbing, mechanical, electrical, construction – everything.  Playfully, I asked him if he could fix my wheelchair if it broke.  He quickly said yes – he never hesitated or even asked if what broke.  I loved everything I was learning about him.  As an added bonus, my cat seemed to like him and she was very discriminating!

Mike was absolutely wonderful, very attentive, genuine, romantic, and, best of all, interested in me.  I felt like a woman for the very first time in my life.  To him, I was Monica the young woman, not a disabled person who needed assistance.  He held doors open because he was a gentleman, not because he thought I could not open a door.  What a refreshing experience.  Amazingly, there was no awkward erroneous first impression to squirm through.  In Mike’s company, I didn’t have to prove anything or be the best at something.  There were no stares, glares, or pity in his eyes.  He didn’t need or want accolades for taking an amputee on a date.  I felt elevated to a place higher than I had ever been before.  I liked it.

We had a wonderful evening.  I hated to see him go.  Before Mike got into his car for the long drive back to Los Angeles, he bent down quickly and kissed me.  I was in a fog as I watched him get into his car.  I heard him say that he would like to see me again if it was okay.  I wanted to scream from the mountaintop that it was okay and tear down my walls but I held back.  I was sure the other shoe would fall.  He was simply too good to be true.

Mike and I saw each other every weekend for almost a year.  He drove to San Diego or I drove to Los Angeles.  We had some incredible dates and learned that we were very compatible with similar philosophies, beliefs and goals.  We visited almost every local tourist attraction such as Disneyland, Seaworld, Balboa Park, Knotts Berry Farm, San Diego Zoo, etc.  We walked many times on the Santa Monica Pier and the Oceanside Pier just listening to the ocean.  We took a one-week vacation to Yosemite National Park.  The weekends were always too short.  Once in a while I dared to wish he did not have to leave. 

After a time, the question of sexual intimacy came up.  Oh my goodness – he was knocking on every wall I had so carefully and deliberately crafted.  There was no way I could imagine being naked in front of him.  After continued rejections, Mike gently suggested that I let him know when I was ready.  My initial thought was, “Ready?  Are you serious?  I will never be ready.”  Public reactions to my appearance with clothes was tough enough. 

In addition, I was beginning to have some nagging questions, “Why would a seemingly normal guy with a great job, a great car, and a home of his own be interested in me?  Why would he, or anyone for that matter, intentionally choose a person with 3 missing limbs?  It was quite obvious he could date anyone he wanted.  What was I missing?  What was he hiding?”  I needed answers.

I told my family all about Mike and how I felt about him.  They were cautiously happy for me but echoed many of my own concerns.  Even Grandma said initially, “Be careful.” 

No matter how hard I waited to see a different side of Mike, however, I never saw one.  I continued to ask him, “Why me?”  He replied that he honestly didn’t understand it either.  He never planned to date a triple amputee but he had never met anyone like me.  He said he had no real explanation except that I was kind, intelligent, funny, generous, thoughtful, compassionate, trustworthy, honest, and… beautiful.  Beautiful.  No one ever called me that before.  However, I was still not convinced that positive character traits compensated in any way for 3 missing limbs.  I continued to ask the “why me” questions over and over and over again.  He always simply said that he enjoyed my company, I made him feel loved, and he had no further explanation.  His actions alone were starting to convince me that maybe we were falling in love.  Ironically, although I didn’t know it then, he was thinking I was too good to be true and he wondered why I would want him.  It was obvious, however, that we were getting in deeper and deeper.  

The moment I thought would never come finally did.  I was ready for intimacy.  My first time making love was magical and mesmerizing.  I was now totally convinced that this relationship was for the long term.  This guy was genuine.  He had finally convinced me that I was attractive, desirable, and beautiful.  My confidence skyrocketed.  I was falling fast and deeply in love.  Mike was too.  However, the road to our ultimate happiness was about to become rather bumpy.

Dating With a Disability, Part 1 of 5

As a triple amputee, dating can be tough.  I am a triple amputee, and this is my true dating story. 

I went through high school and college without a true “date.”  While I wanted to date, I could understand why it did not happen.  I had come to believe that the chances of finding a life partner were extremely slim. 

I was 24 years old when I met Mike.  He lived in Los Angeles; I lived in San Diego.  We met at a dinner dance for the club I belonged to called Amputees in Motion (AIM).   He was a driver and had picked up several people who could not drive themselves.  I saw him across the room.  He stood out because he was so tall (6 feet 4 inches I learned later) with gorgeous red hair.  He had not seen me yet.

For me, it was love at first sight but I quickly pushed it out of my consciousness.  By this time, I had become quite sinister to the idea of ever meeting a man, let alone the man of my dreams.  I was convinced that my physical state was too great to go unnoticed.  At this point, I had no more illusions that my disability was simply an incidental detail.  Rather, it was actually a heavy burden that I often wondered if I could continue to carry.  After all, it had already altered my choice of career, prevented a promotion for which I was qualified, and at 24 I had still not had a real date.  It was very difficult to stay optimistic.

To my surprise, the tall red-head asked if he could join our table of 5.  He was solo and reasoned that we needed 1 to fill our table of 6.  I couldn’t believe my luck.  There he was at our table.  The dinner was great, and the conversation was lively.  We learned that his name was Mike, he was a building engineer, and he lived in Los Angeles.  He was also a photographer and took pictures of the AIM events throughout the year.  I wondered if he had an amputation since this was, after all, an amputee club, but he said simply that he was a volunteer driver for those who needed a ride.  I could tell right away that he was fun to be around.

As we moved to the dance room, he came with us.  Good grief, I was exploding with joy.  The tables at the dance floor were very small and could sit only 2 people.  Soon Mike was sitting with me – just us – alone!  I was reluctant to like him so I doubly reinforced the defensive walls around me, insulating me from getting too close and being heartbroken.  I told him that he did not have to humor me by sitting with me, that he should go dance.  He replied calmly, “I don’t like to dance.”  I told him that I didn’t want him doing something different just because I could not dance.  He told me he did not like to dance, that he was just the driver and photographer.  With that out of the way, we went on to have a great time.  The dance went on around us. 

When the time came for him to leave, he asked if he could see me again.  I was speechless initially but I said sure, even though I truly expected to never see him again.  I knew I really liked him but some painful encounters with reality were still fresh.  Getting my hopes up was not an option.  However, as my friends and I returned to San Diego, I thought about the night and the good time I had.  Apparently, I was uncharacteristically quiet, and the women I rode with confessed that they too thought there was something in the air between Mike and me.  I told them I didn’t think so but deep inside I hoped they were right.

Mike did call about 2 weeks later and asked if he could come to San Diego and take me to dinner.  I was quite surprised and very excited.  He said it would take about 2 hours to get to my house.  I had just enough time to shower and dress for my first real date.  I was 24.

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.