November is the month in the United States that Americans give thanks for all the things we are grateful for, so I thought it only appropriate to write about what I am thankful for in my life. I have many, many things to be thankful for and the past seven weeks have reminded me how fortunate I am, so I will try to express my thanks and promise to try not to make it too sappy.

I am thankful for my family
I have been blessed with three healthy, smart and good kids. They each are special in their own way. While they certainly have their trying moments, I am very fortunate to have my kids and they have given me joy and pleasure every day since they were born. I am also blessed to have a wonderful wife. There’s no question that when going through an illness or disabling condition you learn if you’ve married the right person.  I most certainly did; my wife’s support has never wavered and I could not have ever got through the past six years without her by side.

I am thankful I was given the strength and perseverance to survive adversity
After years of surgeries that were unsuccessful ending in disabling pain, I could have easily given in, taken to my couch and collected disability for the rest of my life. Sadly, I have met plenty of people who reported that their disabled spouses have taken to their beds instead of accepting their losses, using what they still have to get out and live their lives. Every day, while I am out living my life, I am grateful that I had the strength and perseverance not to allow my disability to destroy not only my life, but the lives of my family as well.

I am thankful for my job
My job might not give me the satisfaction that teaching gave me, but it is a job and I am earning income which is doing my part in helping to support my family. The odds were against me as an unemployed newly-disabled 48 year old man. Not only was my age and disability against me, but we currently live in an economy where jobs are almost impossible to come by. Therefore, no matter what is happening at work, good or bad, I always stop and think about how fortunate I am to have not only a job, but a decent job. Suddenly all the office B.S. doesn’t seem important.

I am thankful for extended family who I can reach out to for support
During times of sickness and need, people outside our immediate families can provide necessary support. While going through my recent amputation surgery, my extended family members were a huge support, not only to me, but in giving my wife some much needed breaks. I am grateful to all my family members who visited, called, texted and kept me company late at night when I was feeling like crap and didn’t want to be alone.

I am thankful for my home
My family and I are very fortunate to live in a warm comfortable home where we have everything we could ever need and more. With so many families in this world living without shelter, warmth, proper clothing or food, we are the luckiest people in the world. This is something I often take for granted and I need to learn to be grateful for this every day.

It is important that we keep life in perspective. No matter what our own troubles may be, we need to be grateful for what we have. During the past six years, I have always kept perspective of my situation, realizing that there were so many others going through much worse. There are so many people in this world going through injury, sickness and impoverished conditions that make my situation seem minor. At every turn in my journey with this ankle I have pushed forward knowing I did not have a life-threatening disease and the worst that would happen is I would lose my left leg. Yet I would survive, I would use crutches, get a prosthetic leg and learn how to live a full life.

I have survived my worst, amputation, and my life has most certainly not ended. Not only in the month of November but all year long, stop and take time to be grateful for all that you have. When you keep focus on all the good things in your life, your problems are easier to bear.

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The Mayo Clinic defines phantom pain as “pain that feels like it’s coming from a body part that’s no longer there”. It can come in the form of pain or sensations. Phantom pain is when you feel pain in a limb that is no longer there, while a phantom sensation is feeling that the limb is still there but not experiencing pain from it. I was forewarned about phantom pain from my orthopedic surgeon, a pain management doctor and other amputees, yet I could honestly only imagine what phantom pain was from an experience I would have after each of my previous 6 surgeries. In the days after each of my other surgeries I would wake up around the time pain meds were due. When I would wake up, I’d have the sensation that my affected leg would be resting in a certain position. When I took a look though, the leg would actually be in a completely different position. I always found this to be such an odd feeling. So when I thought about phantom pain, I could believe it existed due to this feeling I would get after surgeries. I also thought that would be what phantom pain would feel like. I was not completely wrong, but there is just so much more to it.

Honestly, I am not sure I could possibly explain what phantom pain feels like, because I don’t think anyone could possibly understand how it feels until they experience it. What I can say is that it definitely exists and I’ve felt it from the time the nerve block wore off the very day of the amputation surgery. As I sit here writing, I can feel my missing lower left leg, but not as I did most of my life. I feel the foot and ankle, but it is heavy and it feels as if there is a force pushing against it. The feeling is so strong that if I didn’t know better I would absolutely swear my foot was still here.

The most common phantom pain I experience is a burning pain in my missing foot. The following are some of the more bizarre phantom pain/sensations that I endure.

My Top 6 Weirdest Phantom Pain/Sensations

1. I have yet to feel pain or anything at the end of the stump. As far as my brain is concerned, the end of my stump is my foot. All pain or sensation feels like they are on the bottom of the missing foot. When the staples were being removed my eyes were watching them coming out of the stump, but my brain was feeling them coming out of my foot.

2. The first time I walked on my crutches in the hospital my phantom foot kept dragging on the floor. Even now, here and there, my phantom foot drops to the floor and tries to trip me as I am walking.

3. The stump shrinker is a tight-fitting compression garment that is worn over the stump. While wearing it I feel like I have a tightly-fitted cast on my lower leg. I can even feel my toes sticking out the end of the cast.

4. For about a week I suffered a lot of nerve pain. The nerve pain felt like the arch of my foot was being attacked by hundreds of electrical shocks.

5. Every morning when I wake up I have a tough time moving my leg. It is the feeling you might have after sitting on your legs for a while. When you go to move your leg it is heavy and numb before the pins and needles begin. That numb feeling before the pins and needles start is how my lower missing leg feels, but the pins and needles never come. The numb phantom leg remains until after I shower and start moving about the house.

6. My missing big toe certainly doesn’t feel like it is missing. It is constantly getting stuck, bent down. No matter what I do I cannot get it to unstick. I have even, without thinking, reached down to fix it many times, only to have my hand discover that there is nothing there.

Luckily I have found a few methods to help.

The phantom pain is a brain thing. The nerves are still sending signals to the brain from the missing limb. The best way I have found to help with the phantom pain is to keep my mind off the amputation. When my mind is occupied on something other than my leg I don’t feel the phantom pain.

Keeping active is also a great way to combat the phantom pain. When I am up and about, obviously on my crutches, I am not bothered by the phantom pain. A workout at the gym, I feel no phantom pain. Climb on my tractor and suck up the leaves, I feel no phantom pain. Sit on the couch doing nothing, I am hammered with phantom pain.

Tactile therapy and massage can also help. This helps to focus the mind on the part of the leg that is still there. I use a variety of items that have different textures. I might start by tapping my thigh with a pen or empty paper towel roll, then brushing the thigh with a hairbrush. I like to end by buffing my thigh with the soft stuffed hippo my daughter brought me while I was in the hospital. I also gently massage the stump for a few minutes.

The tactile therapy and massaging I do in the evening when relaxing before bed. That is when the phantom pain is acting up the worst. Once I am done, I ice the stump for about a half hour, then follow with a half hour of heat. I found a great product called the polar sleeve. The Polar Sleeve was designed for amputees and has two pockets inside a sleeve that fits around the stump, with two Velcro straps holding it in place. The pockets hold reusable cold/hot packets. The great thing about the polar sleeve is that it gives either cold or hot therapy around the entire stump. The packets are held in place, never sliding off, and if you need to get up for something, it goes with you.

Most nights after my routine of tricks ending with the icing/heating, shortly after I get in bed the phantom pain calms down and off I go to sleep.

My phantom pain is completely expected and normal for where I am in the amputation. I am anticipating that in a few months it will dissipate. However, it is reasonable that amputees will always experience some degree of phantom pain, and there have even been amputees that still report being able to wiggle the toes of their amputated leg decades later. So I have looked into trying some methods that have been successful in reducing phantom pain. Mirror Therapy seems to have had some good success and I am giving it a try.

Mirror Therapy

Once again there are a few theories on why amputees have phantom pain. It is believed that the brain and spine receive mixed signals because after the limb has been amputated the brain loses signals to the missing limb. The Mirror Therepy is a way of tricking the brain to think the limb is still there. It is very easy to do. A mirror is placed so that it reflects the remaining limb, in my case the right leg. While having focused concentration you watch the reflection of the remaining limb being moved. The idea is that your brain is tricked into thinking the reflection is the missing limb. Doing this daily over time has been found to be successful in greatly reducing phantom pain for good. I have to say, while doing the mirror therapy I feel amazing and it really does seem like the reflection is the amputated leg. I will report on its success in 4 to 6 weeks.

So the leg that caused me years of agony now seems to haunt me with phantom pain. Many have asked “is the pain the same”? My answer is no, it is oranges to broccoli. While the phantom pain can be bad at times and the phantom sensations can drive me insane, this journey was one I knew wouldn’t easy. With time the good days will outweigh the bad ones. What is important is to remain positive and appreciate the small breakthroughs. I chose to amputate with the knowledge that I had a long road ahead to better walking days. That is where I keep my focus: on better walking days ahead.

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Resources

http://www.mayoclinic.org/diseases-conditions/phantom-pain/basics/definition/con-20023268

My wife and I
(1991)

In 1992 I married my wonderful wife who, without skiing, I most likely would have never met.  She went from the worse ski lesson I had ever given, to employee, to wife and mother of my children.  Somewhere along my journey as a ski instructor, I was summoned out on the hill to help a damsel in distress.  A dashing young male ski instructor was the last thing she wanted and had she no qualms letting me know.  Needless to say, I never got her off the hill and spent the next few years avoiding her as she did me.  As luck would have it she showed up at the front desk of the Children’s Learning Center during my desperate need for warm bodies to help out with the masses of 3 year olds floundering in the snow.  I overlooked the fact that she couldn’t ski to save her life and hired her.  To my surprise she really could ski and ended up being the one I couldn’t live without.  A little over a year later we were married after the easiest and most natural courtship I ever experienced.  We will have been married twenty two years in May and have three children.  And all of this came from my decision at sixteen years old to become a ski instructor so I would have a season ski pass to ski.

After we married, we decided to move high into the Rocky Mountains of Colorado.  I was more than ready for a new challenge in my career and wanted it in Ski Resort Management.  So, with my wife at my side and willing, we packed up everything we had and moved to Breckenridge, Colorado.  The problem came when after moving there for the summer, I realized that not only would getting the kind of job I wanted be a long shot, but I’d outgrown that kind of life.  I was ready to settle down and start a family and that was not the place to make it happen.  So we repacked everything and trekked back across the county to settle in a suburban community in upstate NY.

For a few years I floundered trying to figure out what I wanted to do.  The answer was obvious, but it would take some time and work to make happen.  I was a natural teacher, so the teaching part of being a ski instructor came naturally. I didn’t have to put any work into it and there was an overwhelming amount of students, parents, and fellow ski instructors coaxing me to become an elementary teacher over the years.  So I followed my passion, went back to school at the age of 30, got a Master’s Degree and became a teacher.  I would have not realized my passion for teaching without skiing.

Like most people who are avid in the sport they enjoy, I dreamed of having my kids share

Skiing with my kids!

my love of skiing.  So with each one of my three children, the winter they were closest to four, I popped them on skies and spent many backbreaking hours teaching them to ski.  It all paid off as I ended up with three beautiful little skiers and two of the three share the love I have for the sport.

Our family winter weekends became exactly what I had dreamed of.  I spent them skiing with my kids.  From many I got flack; other fathers tried convincing me to ski with them and send my kids off to ski in ski groups, but it was skiing with my kids that made my winter weekends special.  When I was out on the mountain with them the stresses of everyday life, work and the daily grind of home life melted away, and the father-child bonding became priceless. We skied, laughed, talked, took hot chocolate breaks and most of all enjoyed the time together.  I couldn’t imagine having a better way of enjoying my children.  In the end, the cost of not making some adult friendships will never come close to the payment I got from skiing with my kids

Then it all came crashing down.  After spending a winter skiing with a broken ankle, not caused by skiing, and I didn’t know I had, my life went from going to a job I loved every day and skiing with my children to a life of pain, multiple surgeries and compromised mobility.  Long gone were the days of living on skies – I now was living on a pair of crutches.

For three of the next four winters I endured major ankle surgeries and spent the winters in leg casts and on crutches.  Heartbroken, I struggled to find ways for my kids to ski as much as possible.  Their only choice was to ski in a lesson group as they were too young to ski on their own.  I could have lived with giving up skiing, but what hurt the deepest was not being able to ski with my children.

Trying to hold on to the experience I once had skiing with my children, I forced myself out on the hill during winters that didn’t involve recovery from surgery.  Walking was excruciating and not doable, and so it goes without saying that skiing was a torturous experience.  My visions of leaving my daughter crying while hugging me goodbye, as I left for the hospital for the 5^th surgery, saying “I don’t want you to have another surgery” and my last words before leaving, “I am doing this so I can ski with you,” kept me searching for a solution to ski.

Four tracking

Skiing is a sport that many people with a wide range of disabilities can enjoy though adaptive methods.  Someone with a leg amputation can learn to ski quite well using a method called Three Tracking.  This is done with using their remaining leg and outriggers (forearm crutches fitted with small skis on the tips).  Those with various lower body or leg conditions who are able to walk with the use of a pair of crutches, often do well by learning to ski using the Four Tracking method.  This method gives a four point contact on the snow.  The outriggers are used to help with balance and turning.  For someone with good upper body strength but no use of their lower body, they can learn to ski using a mono- ski.  The mono-skier sits in a molded shell mounted above a single ski and uses two hand-held outriggers to help steer.  Indeed, I had some options.  I really felt like three tracking would be the most ideal, allowing me to progress to the level of skier I once was.  The only problem would be what to do with my damaged leg.  It would dangle in the way and it would be to exhausting to hold it up out of the way.  So I went with the four track method, adapted to my needs.  I basically ski with my arms, while my legs go for the ride.  It actually works quite well, because I am carrying my weight though the outriggers and arms, taking the pressure off my affected leg.

Skiing once again made my life better.  While my leg still endured a great deal of pain from being in the ski boot and the unavoidable pressure it still receives, even with four tracking, and my arms also burn with pain after a few runs and conquering the black diamond trails would never happen getting back out on the slopes with my kids was the start to rebuilding my life.  It wasn’t so much about skiing; rather, it rejuvenated me emotionally and gave me some well-needed fuel to jumpstart my reinvented life.

It is hard to tell what my life would have been like if I had never made the decision to become a ski instructor at the age of sixteen. Maybe it would have been better, or maybe the small town would have engulfed me and snuffed out my life, I don’t know.  What I do know is that skiing opened the world up for me.  It allowed me to experience people, a social life in which to sow my young wild oats, travel, career, friends, a wife, an amazing bonding experience with my children, and some emotional fuel to rebuild my life after catastrophic injury.  The icing on the cake is having my 16 year old son join the Adaptive Sports Foundation as a Ski Instructor this winter.  If I were to never ski again my dreams will be fulfilled knowing that my love of skiing lives within my son and it too will help shape the course of his life.

These are indeed excellent words to live by.  A poor attitude will disable you and isolate you from life.  Adapting a positive attitude is essential, but not always easy when learning to live with disability.  Having a positive attitude can be acquired, but it is not necessarily something you wake up with one morning.  The process of accepting your physical limitations and living with a disability involves a change in your mindset.

The definition of mindset: A fixed mental attitude or disposition that predetermines a person’s responses to and interpretations of situations.  The mindset you need when dealing with physical limitations is to embrace your circumstances (disability).  Accepting you are disabled doesn’t mean you are not capable.  It is an understanding and acceptance that you have to make changes in the way you do things.  Without the acceptance of the reality of your situation, you won’t achieve the attitude necessary to have a fulfilled life.

Over the past five years, I have had my bones in my left ankle sliced, diced and screwed together six times.  These surgeries all involved massive pain, leg casts, and many months of full dependence on crutches.  I was left with debilitating pain and a permanent disability.  I could no longer do the active things I had enjoyed and no longer continue a career I was passionate about.  The one thing that allowed me to get through all of this was my choice to maintain the right mindset, my mental attitude towards each situation along my journey.

From the start, having the right attitude was how I viewed needing to be dependent on crutches.  I went from being an active person, who did mostly everything standing, to needing a pair of crutches just to get to the bathroom.  This was a daunting experience and in the beginning there were times I didn’t think I could tolerate needing crutches another day.  The crutches were not easy to acclimate to, but it was my mindset that kept me going.  I quickly adapted the mindset that the crutches were not the enemy, but were rather what made it possible to ambulate and remain a productive person.  It was the change in my perception of crutches as miserable torture devices to being helpful tools that made the difference and kept my attitude positive.

Later, after going through six surgeries and years of pain to have no resolve, I was left lost and feeling helpless.  Maintaining a positive attitude seemed unattainable.  I would have never got through six surgeries, years of constant pain, using crutches and losing my career if I hadn’t retained a good attitude.  It also took an immense amount of positive attitude to keep going and do the things I had continued to do.  At that point getting out of bed each day, taking care of myself and being a parent required a positive attitude.  However, this was not enough; my mindset was one of denial of my disability and feeling sorry for myself.

My wife would say, “You need to start thinking like a disabled person.”  At the time I didn’t understand what she meant.  To me thinking like a disabled person would be giving in and having a negative attitude.  I thought the way to maintain a good attitude was to continue to live as if nothing had changed.  The problem was that my physical capabilities had changed and they were preventing me from living the way I once did.  I was at a road block and unable to move forward with my life.  I acted as if I was not disabled, and in the process I was frustrating myself trying to do things that were simply impossible, such as walking without the assistance of crutches.  I had the wrong mindset about being disabled; I thought that without the full use of my leg I would live a sedentary life and I wanted the active life I once had back.  I was in search of someone to help me, give me a break or make my life better.  This mindset was preventing me from healing emotionally and achieving the life I wanted.

Revisiting the many stories of people with much greater disabilities then mine, I realized that accepting my disability didn’t mean I was incapable.   I changed my mindset from being an able-bodied person to one with limitations, just as an alcoholic has to realize that they have a drinking problem before they can become sober.  I had spent four years living from surgery to surgery in search of a cure.  There was no cure; my leg was shot, and at that point there was nothing a surgeon could do for me.  So I made the choice to embrace my disability (I prefer the politically incorrect term of “my handicap”) and adapt my life around it.  I mourned the way I once had done things and began finding new ways of accomplishing tasks.  I readapted my perception of the crutches being helpful tools as opposed to entrapments, and most importantly I was able to take back control of my life.  It was then that I began to view life positively and life shined back at me.

I now live happily and maintain a positive attitude towards my circumstances.  This is because my mindset is one of accepting my disability and its limitations.  Instead of being angry about what I cannot do, I focus on what I can do, and I’m always open to trying new things.  My crutches enable me to participate in an active life, I returned to skiing using outriggers, and I found a new career.  These things would not have been attainable without the mindset of accepting my disability; therefore I needed to regroup and reassess how I accomplish things.  I have accepted that I can no longer achieve in the way I once did, but I challenge myself in different ways, still succeeding in great things.  The more I accomplish, the more I strive for and the more success I enjoy.  Thanks to my SideStix and the snowshoe attachments for them I am looking forward to trying some snowshoeing this winter.  Who would have ever though that someone could snowshoe on crutches!  Just as with skiing last winter, I won’t necessarily be trekking the glaciers, but I will embrace the challenge and enjoy being out on the snow.

When you cannot change your physical limitations or circumstances, embrace your disability. This new mindset will open a world of new possibilities.

“Your living is determined not so much by what life brings to you as by the attitude you bring to life; not so much by what happens to you as by the way your mind looks at what happens.” – Kahlil Gibran

Read  8 Steps to Accepting Your Disability for more details on how I achieved the correct mindset.