What Makes The Man?

Sometimes, those who knew me when I was healthy still see me as the healthy person I once was in better times. That is great... we all would like to be remembered in good light but it is not “me” as I am today. What I feel is worse, however, is that I see myself vastly differently today than when I was healthy... I feel I am a very different person today... and, in many ways, I am a different person today... but I am sometimes reminded that, in some ways, I am indeed the same person I have always been...

That gets me wondering if those who see me the same as I was when I was healthy fully understand my limitations and how these limitations have caused me to change... to evolve... simply in order to survive. If they don't understand these limitations, there is no way they can see the person I am today.

Every now and then, this uncertainty inevitably gets us talking about who I was then compared to who I am today.

I've been meaning to write about this topic for quite a long time but it was always something I put on the back burner because, to discuss this topic fully, I need to write about some of my past... something I've always been reluctant to do. Recently, while at the lake house, this topic popped up again due to a significant incident so I decided it was time to write and to cite some examples.

Recent events while at the lake house have proven to me (and, I think, to everyone present that day) that, in some ways, I am indeed the same man I was when I was healthy, strong and virtually invincible. These same events also proved that I am a very different person... someone who can no longer trust his body... someone who has lost faith in his own body and abilities... someone who understands his limitations but still struggles to live within those limitations.

Whenever I try to put all of this into words, I'm always left feeling as though I didn't accurately express how I feel... that I didn't accurately express my thought processes about who I am today... and that I didn't accurately express my physical limitations today. So, first let me break down 'who I am' today into three categories... physically, emotionally, and mentally.

Physically

Physically, we all know that I am not the same person. My health failed well over a decade ago and I retired as disabled with extensive spinal injuries almost two decades ago. Between the incurable, debilitating rare disease and the extensive spinal injuries, there is no denying that, physically, I am not the same person I once was.

There is absolutely no doubt that I am truly disabled, more so some days than others, but I am always physically handicapped to some degree each and every moment of every day. Some days are better than others but, physically, I feel as though I am just an empty shell of my former self.

All that being said, I am also very aware of the fact that physical attributes do not make the man. It is what we do with our attributes that makes the man (this is important for later in this long blog entry).

Emotionally

My emotions are definitely affected by my health and this is the toughest thing to overcome because my emotions seem to be mired in a never-ending cycle. This is typical for anyone struggling with chronic illness and I actually expect and understand these emotional struggles.

If I tire (as I do every day after only a few hours), quite simply, I become more emotional. Fatigue weakens us physically, mentally and emotionally. That is a basic fact of physiology. I accept this and understand it completely.

As my health dips to its lows, I am reminded of the fragility of life which then evokes some equally low and sometimes overwhelming emotions. On these days, I can't help but compare my old self to my new self and the contrast is drastic and dynamic.

These low periods of debilitating health remind me of how far my health and physical abilities have deteriorated which triggers another cycle of grief. (For those who are fortunate enough to have no experience in this, let me enlighten you a bit... those struggling with chronic illness grieve the loss of their healthy life... the loss of their healthy bodies... loss of their careers... loss of their active lives... in short, they grieve the loss of the life they always referred to as “my life”.)

As anyone with chronic illness knows, progressing and regressing through the stages of grief is a never-ending battle. The cycle repeats, over and over... and again... and again. As one's health waxes and wanes, the stages of grief cycle in sync with these changes.

At times, my emotions even visit very dark places. All this being considered, I still feel as though I manage this rollercoaster ride of emotions well. (Truth be told, this is one of the few things which adds some spice to life nowadays!)

Before my illness, I was an emotional rock. As an example, I was Team Chief of an elite Air Force Honor Guard for three years which required me, among many other things, to be responsible for over 300 military funerals. These responsibilities included managing my entire team, handling paperwork, directing more than 300 gut-wrenching, heartfelt funerals with military honors as well as comforting and advising these grieving families. I performed these funerals with rather intimate, personal, one-on-one contact with very emotional, grieving family members... for over 300 funerals. Some of these funerals were even for my own close personal friends yet I was always stoic, solid, personable, caring, understanding and an emotional rock... always.

Today, especially when my energy level is exceptionally low, I can be reduced to tears simply due to the frustrations of relatively minor symptoms. Logically speaking, I can even tell myself these are relatively minor symptoms and therefore they should not be a problem but my emotions have had enough and I find myself emotional and upset.

Not being an emotional rock is new to me and so, in this way, I have changed and I find I am a very different person today.

Mentally

This is the part of myself where I logically come to terms with limitations and have a new set of rules in my head... a list of do's and don'ts, if you will.

Mentally, I need to understand and accept my new limitations (this is the logical part of the cyclic emotional grieving process... acceptance... that all people with chronic illness experience... grieving the loss of their old selves).

Logically, I understand that I am disabled and that I must adapt my life constantly. Logically, I know and understand that I must ask for help at times. Logically, I know I must plan for approaching and even passing my physical limits each and every day. In my brain, I know and understand I cannot do most of the things which, whether simple or demanding, I used to accomplish with the ease only a healthy person possesses.

I have accepted that I can no longer be a lone operator and do things without the help of others. I have learned to ask for help and have learned to accept that help. This is something I would never do when I was healthy... I was self-sufficient, independent, a jack of all trades, a lone operator and I actually thrived on being this person.

Since I have accepted my new limitations and disabilities, I know that there is only so much walking I can do in a day before I need a cane or a chair (or a bed!). I know and have accepted that I must be careful to avoid known and even unknown triggers affecting my Systemic Mastocytosis because it is physically impossible to simply “push on through” the effects of this insidious illness. No amount of willpower nor physical strength can keep this illness in check.

I even know and understand that Systemic Mastocytosis is as dangerous as it is debilitating with unknown triggers causing a cascade of life threatening symptoms.

Mentally, these things I know. These things I fully understand and I adjust my life accordingly each and every day. I have accepted that I have weaknesses today and I must constantly adapt in order to overcome my obstacles even if it means asking for help and accepting that help.

Adapting and overcoming obstacles isn't new for me... what has changed are the obstacles. What is new to me is needing to adapt so I can overcome the obstacles which make everyday, mundane, “take-for-granted” chores a seemingly insurmountable battle. This is in vast contrast to the person I once was when I was healthy. So, in this way, I am a different person.

Even knowing and understanding all of these limitations and disabilities... mentally... I still can sometimes slip up and revert to my old self...

At the Lake House

Just recently, I was at the lake house with a close friend whom has known me for decades. He is an old Air Force buddy who knew me before my line-of-duty injuries, during those injuries, through the long road of rehabilitation, and since these injuries. We were again talking about this very topic and I was trying to explain that I am no longer the person I once was as he was trying to convince me of the opposite... that I am still the man I always was...

I explained that now I find that I often must ask for help. I never needed to ask for help before and always did fine on my own.

I explained that I must nap everyday and can't just 'push on through' the fatigue nor disabilities. When I was healthy, I could indeed 'push on through' and my strong body, mind and soul would always get me there. Today, if I try to 'push on through'... my health crashes suddenly, spectacularly and dangerously.

I explained that there are many things I quite simply cannot do anymore and I know I must respect my new limitations.

I Can't

When I was healthy, I deplored the phrase, “I can't”. I never allowed that phrase to be spoken by anyone who worked with me in the Air Force. I despised it whenever a so-called "leader" would utter this useless, pointless phrase meant only for the losers of the world. 

I never allowed this phrase to be spoken by any of my students whether they were Air Force, DoD, piano students, aerospace students, cadets... the phrase was not a part of my curriculum and was a phrase which was completely off-limits. In fact, in my piano studio, I had a framed sign which stated that the phrase “I can't” was not allowed in the studio.

Today, I must accept the fact that I need to say “I can't” every day. Quite frankly and realistically speaking, there are things which I physically cannot do. When I encounter these obstacles, I must ask for help... and, today, I do ask for help.

This is a tough pill to swallow for someone who was a “do it all myself” sort of guy and especially for someone coming from the demanding career I once lived and loved. Worse yet, I must often tell friends and loved ones that “I can't” even when they ask for help or ask us to join them out for a few drinks. Needless to say, this affects other aspects of me, including my emotions. Saying “I can't” to family and friends is still difficult and I expect it to always be difficult.

Regardless, I know and understand that my own health must now come first.

I was always the rescuer, the “do-er”, but now am someone who must ask for help and, at times, say "I can't".

The Man Before Disability

When I was healthy, over the decades, I rescued countless people because I never believed in “I can't” and because I believe it is everyone's responsibility to help those in need.

In order to prove my point about the contrast between who I was when I was healthy and the man I am today with debilitating limitations, I should cite some examples of some of the things I've done when healthy. Some of these examples I rarely mention... some I've never mentioned aloud... and none have ever been put into writing until now. (And, many other experiences and examples remain tucked away in the back of my memory, in silence and anonymity for now.)

I was always the type of person who would spring into action without thinking of the consequences whenever someone needed help. I seemed to be one of those people who had the innate ability to always be at the right place at the right time. I've selflessly and without any thought of my own personal safety put my life in jeopardy more times than I can count over the decades. This is simply who I was...

It is difficult to explain... and I'm not even sure how it happens or why it happens... but whenever an emergency or significant event is playing out before my eyes, I actually already know what is happening and which direction I must go and when... somehow, I just know and this has always been with me throughout my life. 

The first time I can remember this unique ability unfolding right before my eyes was when I was 12 years old and renovating our home attic space into my own bedroom. My dad and I were fixing one of the windows... I was holding the window in place as my father placed the hammer down on the window sash out of my sight. I don't know how, but a few moments later I sensed the hammer was falling off the window sash... I instinctively reach out my hand like a lightning strike and blindly grabbed the hammer in mid-air. My dad who rarely shows emotion (this is where I get the "emotional rock" from) was visibly amazed and even asked me how I did that. This innate ability has followed me through life helping me save myself as well as save others in need. 

In addition to somehow always being in the right place at the right time, I was able to be this person because I worked hard at being physically fit.

Since my high school days and through the decades until my second spinal injury, I was in exceptional physical condition through daily exercise. Even in high school, I ran many miles everyday... upwards of 10 miles a night quite often.

I ran to and from basketball practice and games. One basketball coach used to jump up and down on the sideline, shaking his fists in the air, screaming “MAN OF STEEL!” whenever I somehow surprised him on the court so I must have been able to withstand a bit more punishment than everyone else!

I biked all over Long Island (an island 120 miles long off the coast of New York). I was a landscaper through high school. I did roofing jobs, house painting, siding jobs, as well as small home improvement projects for work. I played hockey and basketball. I climbed mountains, sailed and skied. I was very active and I continued this same active lifestyle through college.

While in the Air Force, physical conditioning was even more important because my life depended upon it. The lives of everyone around me depended upon my physical abilities. Not only did I continue my extreme daily physical conditioning, but I also became active in many extreme sports as well as staying active in team sports.

In training as well as for fun, I would scale buildings, cliffs... anything I could find that looked like a challenge. I would run with a heavy pack on my back... I always pushed myself harder to be the best and, some years, I actually was rated the most physically fit in my squadron.

Physical conditioning was always important to me (and still is to this very day as I continue daily physical therapy and rehabilitation).

The Old Me – The Healthy Me

As I wrote above, I've always seemed to have this innate ability to be in the right place at the right time. For someone like me, the “right place at the right time” meant being there to help people in need. As I mentioned previously, I don't know how I did it but I always seemed to know when things were about to go bad and this enabled me to get a jump on responding before anyone else. This innate ability carried on through my career. Being physically fit, enabled me even further.

I've pulled people from burning, mangled vehicles and administered first aid. Some lived, some did not.

I've stopped armed muggers, thieves, robbers, rapists... One time, while being mugged at knifepoint on a bridge with nowhere to go, I quickly and firmly grabbed the wrist of the hand holding the knife with one hand and his crotch with my other hand (and squeezed as hard as I could) and threw him off the bridge into the river below as his coward friends scattered! The rest of the aforementioned criminals I've turned over to the authorities after physical confrontations... some very physical with deadly weapons.

Late one night, I drove past a burning apartment building... no fire trucks, no police, no residents on the street yet... just a burning apartment building. I ran into the burning building and helped clear the building of tenants before police or the fire department even showed up.

Another time, I was awakened in my hotel room to the deafening horn of the fire alarm. As I jumped to my feet, I noticed smoke filtering through under my door... I immediately applied everything I learned from my firefighter father... on my hands and knees, choking on smoke, crawling door to door, dragging people and directing people out of the hotel before finally leaving the hotel myself.

I ran into a home that I knew had a gas leak... when I entered the smelly, gas-filled home, I instantly knew there was a bigger problem when I noticed that a stovetop burner was lit on the main floor and it reminded me of the threat of lit pilot lights and how gas is highly combustible... but I had just disturbed the leaked gas as I entered this home! I remained on scene and cleared the home of gas knowing the entire block of homes could have exploded in an instant.

While at a crowded, hot beach on Long Island with friends, I noticed a swimmer flailing around out beyond the other swimmers and probably caught in a riptide. I instantly scanned to the lifeguard stand only to see the lifeguard talking with some girls gathered around his stand. I sprinted about a hundred yards across the hot sand, bolting right past the lifeguard stand, and dove into the water. As I passed the lifeguard stand at full sprint speed, the lifeguard looked up to see what was going on... I could hear him blow his whistle as I was diving into the surf.

As I was swimming this victim in to shore (securely under my arm), the lifeguard finally reached us and started grabbing for the victim and 'ordering' me to turn the rescue over to him... we had a few choice words as I clocked him in the nose with the back of my fist as though he were an attacking shark. He wisely chose to back off and allow me a wide berth.

As I pulled this victim out of the surf, other lifeguards swarmed in to administer first aid... I turned knowing that the “flirty” lifeguard whom I had just clocked a few short minutes ago was probably headed toward me. Sure enough, he gets up in my face... I stood my ground... nose to nose... we exchanged some angry words as the crowd encircled us and the other lifeguards administered first aid to the poor guy I pulled out of the ocean. 

I demanded to speak with the lifeguard supervisor... then had a few colorful words with him about his flirty, useless lifeguard. If I remember correctly, his only response was a simple, “Well, there you go” as he turned to his lifeguard, shaking his head with a disgusted look on his face, silently acknowledging his lifeguard was in the wrong.

I've been attacked in gunfire in my own home then ran barefoot through my home across shattered glass windows spread all across the floor. In no shoes and with bleeding bare feet, I instinctively leaped over a fence and sprinted down the road chasing after the vehicle containing the fleeing gunman.

I've been involved in car chases, physical fights, and physically detained criminals including a few 'most wanted' dregs of the civilized world until authorities arrived.

I've regularly helped stranded motorists as well as stranded boaters. Once, while refusing help for myself in a crippled boat with an overheating, malfunctioning engine out in the ocean, I directed the Coast Guard to a capsized yacht I spotted off in the distance. The Coast Guard asked if we needed assistance but I opted to allow them to instead search for any survivors from the capsized boat. Many hours later, we limped into the south bays of Long Island wondering what became of the crew of the capsized yacht.

My most strenuous and challenging rescue happened many decades ago on a cold mountain lake when I was in college. A close childhood friend was drowning hundreds of yards from shore and I noticed it from the shore. I never swam faster in my life yet, by the time I reached the area where my friend had been flailing about, there were no signs of him on the surface of the lake.

I took a deep breath and dove deep... I knew this lake well after spending many summers snorkeling every cubic foot of the top ten feet of this area of the lake. About 15 feet down, where the water begins to get dark, cold and presses on your eardrums, I saw a lifeless body slowly sinking, arms straight out to the sides, hair gently waving in the weightlessness of deep water... I pulled his body up to the surface and then swam him back to the shore for my very first true “save”. The image of that lifeless body suspended in the darker water 15 feet below the surface still haunts me today.

As you can see, saying I was always “physically fit” is a bit of an understatement and doesn't accurately describe my level of physical activity nor athletic ability.

In short, I've always been the one in top physical condition who was always the one to run toward disaster while everyone else was running in the opposite direction. When I was healthy and in top shape, I was always prepared and kept rescue gear in the trunk of my car in case I ever came across someone needing help. That is just who I am and who I have always been... or, who I was...

The New Me – The Unhealthy Me - The Person I Am Today

Today, although I do still exercise whenever able, my exercise is really physical therapy, ongoing rehabilitation and pain management meditation.

If Sheila and I hope to do anything on a given day, I must plan and adapt my schedule to allow for rest. If Sheila and I plan to go up to Burlington to do some much needed shopping, I must adapt my schedule in the previous day or two to allow for rest in preparation of shopping. 

I do not have the energy to do more than one or two relatively small things in a day. Also, when we must accomplish something out of the house, I always increase my dosages of medications beforehand in the hopes of averting any major health problems.

If I push myself too hard, my health crashes. This can involve neurological issues such as tremors, weakness, jerkiness (physical, not personality!), vision problems, etc. More often, however, this involves “classic” Systemic Mastocytosis issues such as complete exhaustion, dizziness, lightheadedness, breathing problems, tachycardia, palpitations, nausea, stomach pain, cramps, diarrhea, vomiting, violent shivering, bone pain, joint pain, inflammation, and anaphylaxis. Pushing myself physically is absolutely out of the question. Pushing myself physically causes these problems.

These Systemic Mastocytosis issues always develop when I do more than I should. They also develop when I miss a dose of medications (of four doses a day). These terrible issues develop when I stray from my rather limited diet (no leftovers, no grains, no wheat, no processed foods, no seafood, no poultry, no fermented foods, no artificial ingredients, etc, the list goes on and on). These debilitating issues quickly develop in warm environments or whenever I do something which raises my body temperature. These unpredictable issues can pop up at any time for no known reason. And, as with any illness, any “stress” can also make things much worse.

These Systemic Mastocytosis symptoms are severely debilitating, violent at times and can plunge into life-threatening anaphylaxis. Also, it doesn't take much to trigger my health into these problems so this severely limits my abilities and activities today.

Now, add to this list of problems the problems which come with my extensive spinal injuries. Naturally, any amount of lifting, bending, twisting, or even mild activity can exasperate inflammation around these extensive spinal injuries. Sitting longer than 10-20 minutes is painful. Standing longer than 10-20 minutes is extremely painful. Activities as simple as cleaning dishes can be excruciating. At times, I walk with a cane.

Today, I must manage my energy very carefully. I need to nap two to four hours every day. If I fatigue myself, my heath will crash which will cause poor health to linger for days or even weeks! If I know I will need to do laundry... that is all I do in a day otherwise my health will crash. If I know I must do some shopping with Sheila... that is all I do for a day or two otherwise my health will crash as my body wears down.

Today, accomplishing more than just a few small, non-strenuous things in a day is extremely difficult. I need to do things slowly and deliberately while closely monitoring my overall health. I must always stay cool (physically and emotionally) and carefully monitor all I eat. This severely limits what I can accomplish in any given day.

Today, my life revolves around my health first... my sanity, needs and wants second... and Sheila's needs. I simply do not have the energy nor health for anything more. If something else pops up and wedges itself into my life, then my needs and Sheila's needs get wedged out.

There is only so much energy and health to go around in any given day. More importantly, whenever I push my limits since my health has deteriorated, my health crashes and it can take weeks or months to recover.

Back to the Lake House

While at the lake house a few weeks ago, I was trying to express to my old Air Force buddy and good friend that I am no longer capable of being that person I once was and that I truly understand this and have accepted this fact. “I'm okay with this... it is a new me”, I told him.

I explained that today I must say “I can't” when strenuous, physically demanding situations like the above arise. My health could not, nor would not, withstand the stresses of those types of rescues and activities without crashing to dangerous levels. Attempting a rescue such as any of those described above could be likened to trying to fulfill a death wish.

I explained that even helping a friend with a flat tire would be something I would need to think hard about... and then arrange for taking some activity out of my day so I would have the health and energy for changing the flat tire. Everything has a price and my life is now about managing energy in a constant give-and-take... constant sacrifice...

Although I even explained to this friend most of what I wrote above, I still felt as though I was not effectively explaining how I feel I am not the same person I once was when I was healthy. He replied, calmly, “You are the same person...” I still had the nagging feeling I was missing something which would help to explain my position leaving me unable to accurately express it.

The conversation sort of faded and dissolved to a new topic as we were distracted by the kids. We went back to vacation activities but an incident was about to enlighten me...

An Enlightening Incident

The following day we had a house full of kids. Everyone was swimming, diving, boating, splashing and having a good time. I was out on the dock doing my usual thing... capturing all the fun in photographs with some of my photography gear in my hands and other photography gear strategically placed around me for easy, quick access.

I was alternating between shooting some landscape photos and shooting some photos of the kids. A sound out of the ordinary captured my attention and I quickly pulled the camera away from my eye... it was the sound of splashing and gasping off in the distance... as I pulled the camera away from my eye, I was quickly scanning across the water...

I saw one of the younger kids in deep water about 20 yards away get slapped with another wave as he choked out, “I need help”, while spitting out some water. His call for help was barely audible which was a sign of him taking on water. He was gasping, spitting out water, flailing in the water, and he actually asked for help... someone needed to act a few seconds ago!

By the time he had choked out “I need help”, I had already put my camera down, removed my eyeglasses, removed my heavy shirt and was diving into the water toward this child.

Now... I could say I didn't think about the consequences I would face due to my deteriorated health and new physical limits and that I just reacted instinctively but that would not be true. Perhaps I did react instinctively but my head was arguing with my body. The truth is, I did think about the consequences as I was quickly tossing off my clothing as though my own life depended upon it.

In the past, whenever a rescue was unfolding, I was filled with boundless, explosive excitement and had so much momentum there was no way anyone could stop me. I never thought about what could happen to me. Those thoughts just never entered my mind. 

This day, however, I found myself filled with dread and a dark feeling of impending doom knowing what I was about to do was going far beyond my new physical limits into a very dangerous, dark place.

A million thoughts were running through my mind in this urgent instant, I was thinking that even on a good day my breathing is 'bad'. I get winded very easily. I knew that a rescuer being unable to breath in a situation such as this would be an exceptionally bad thing.

I also knew that I was highly apt go into anaphylaxic shock as I often do during physical activity or stressful situations... hell, I sometimes go into anaphylaxic shock even at rest for no known reason! The chances of it happening during this incident were high.

I knew that the rescuer going into anaphlaxis while attempting to help someone in need and in rough, deep water would be an exceptionally bad thing. So, the truth is, I did indeed think about the consequences...yet, I still instantly chose to dive in, head first, both literally and figuratively.

All these thoughts ran through my head, concurrently in a sea of confusion, in this one instant.

I dove in as though I were my old healthy self, with no hesitation, and as though I had no consequences to face whatsoever even though, mentally, I was screaming to myself that “this activity is off limits” and beyond my new level of abilities (or, inabilities).

In the next instant the world went silent and dark as a “whoooooosh” of bubbles flowed past my ears... my hands still extended out over my head, I was quietly enveloped in cool, dark water (honestly, it felt great... I hadn't done this in a very long time... not since before my debilitating spinal injuries)... I had flashes of my friend's lifeless body in that cold, dark lake decades ago... there was dark silence as I took one or two powerful underwater breaststrokes toward the last place I saw the child choking and gasping for air...

I surfaced with a burst of energy and stayed on the surface now... arm over arm... scanning for the child in the high waves caused by persistent, powerful winds. My long rescue dive got me more than halfway there by the time I surfaced and started swimming on the surface.

The moment I surfaced, I realized that the wind was whipping worse than I had thought which created waves higher than my own head. These waves made it difficult to find the struggling child but I caught a glimpse of him as he crested up on a wave. I knew that if the waves were higher than my own head, the conditions were very bad for a young child.

I was cursing myself and all the parents whom I thought were on lifeguard duty, “Why didn't one of the adults physically test out the swimming conditions before allowing the kids to go swimming?” “Ugggg...”

Angry white caps were slapping me in the back of the head as I tried to keep my eyes on the struggling child between waves. I caught my first glimpse of him between wave crests. Within a few strokes, I had wrapped my left arm around the child's chest, under his arms, and began a rescue sidestroke back to the dock at the house.

As I turned to swim toward the dock, I was caught off guard as I was instantly slapped in the face with wave after wave as I tried to swim against the wind and waves... while dragging a tired, winded child. We were both still trying to catch our breath between waves slapping us in the face and I knew that wasn't good for my victim so I reached down and grabbed his leg in an adapted hold so I could lift him even farther out of the water and hopefully place his face above the waves as I dragged him back to the dock. This meant a more difficult swim for me though...

I was now having trouble breathing myself. Systemic Mastocytosis had stepped in and took my breath away... my strength was also fading quickly, probably due to poor breathing. This also meant a high probability of impending anaphylaxis... I knew from experience that my health was quickly failing and I was now seeing the first signs of a usual cascade of debilitating symptoms.

I only had to swim about 20 yards to get back to the dock where others were watching and waiting to help but it may as well have been 200 yards because I could not breathe. Air was going in and out but no oxygen was getting into my lungs... I knew this meant no oxygen was getting to my muscles... I was slapped with another wave and breathed in some water... choking a bit...

At this point I had my doubts about not needing help myself... I was losing faith in my body again... and it seemed like an eternity since I dove into this situation. I found myself struggling with my own ability to breath, weakness and making headway but it was not long before we were close enough to the dock that a couple of adults plucked the child out of the water.

I no longer had the energy to hang onto the dock and the wind quickly pushed me away from the dock. I couldn't breathe at all at this point... I was dizzy, weak and gasping for air... and I no longer had the energy to swim... fortunately, I knew there was a submerged rock nearby so I stopped fighting and just let the wind and waves push me toward that nearby spot as I trod water... I stood on this submerged rock... gasping for air...

The tip of the rock is submerged about four feet under the surface of the water so I was able to stand on this slippery tip of the rock, toes wrapped over the ridge, and get myself high enough to try to catch my breath... gasping for air, trying to breathe again and, hopefully, capture a lung-full of oxygen...

As I stood perched on this submerged rock, I sent Adam off to retrieve my emergency medications especially some epinephrine... within a minute, the epinephrine was tossed to me and, fortunately, I caught it. As I stood on this rock just a couple of yards from the dock that wraps around the house, I administered first aid to myself... hoping I would not lose consciousness due to anaphylaxis as I often do in strenuous, taxing situations.

I stayed perched on that rock for another 15 minutes or so trying to catch my breath before attempting to get myself to the dock and up onto the dock. After the epinephrine did its thing well enough for me to capture a few effective breaths, I was able to get some oxygen into my body... some... not nearly enough to feel comfortable... but some. I was also struggling with coughing up a bit of water and that was definitely not helping any. In addition to impending anaphylaxis and the associated symptoms, I felt like I had a bad case of bronchitis or pneumonia.

Eventually, I was able to catch a few good breaths and so I felt slightly stable... stable enough to lunge for the dock. I figured all l needed to do was lunge, grab ahold of the dock, and then someone would grab me and pull me up. I lunged off the rock and was able to grab ahold of the dock on that first lunge... I then swiftly pulled myself up on the dock. (I couldn't help but wonder if someone was looking out for me and actually pushed me up onto that dock because there was no way I had the energy for a move like that.)

As I somehow swiftly pulled myself up onto the dock, I said to myself, “Wow... I hadn't done that in a loonnnggg time!” referring to the rescue. I wondered if perhaps someone was looking out for me.

Then, I shook my head and said to myself, “What the hell was I thinking?”

“I was the last person who should have dove in!”

Somehow, my old self... the old me which I thought was long gone because I now know better and understand my new limitations... emerged in an instant.

Later that evening after we settled back into the house for dinner, I pulled my old Air Force buddy aside and told him, “Hey, by the way, you were right... apparently, I am still the same person.” (Truth be told, I was actually feeling a bit humbled as well as a bit disgusted with myself.) 

He quickly reminded me of the danger I chose and said, “No, you were right... you are a different person and you need to make different choices.” 

(I should also point out that this friend vehemently defended me later by telling those who were not present that there would have been a drowning if it were not for me.)

It is funny, after this incident, our respective opinions seemed to be flip-flopped. I, myself, found an old part of me still existing somewhere deep inside me confusing me on my own original point. 

"Am I the same person or not?"

The Person vs The Man

There is indeed a part of me that is still the same but when I make choices which require some personal sacrifice, the chances of failure are significantly higher. Yet, apparently, I still choose to go the morally correct route when I am presented with such a choice.

So, how is this one instantaneous choice I made at the lake house that morning affecting me today?

Physically... This one incident put an end to our vacation. I was down for the count for the remainder of our time at the lake. I couldn't breathe... I was weak... I was nauseated... I was overwhelmingly exhausted... I was still coughing up water or phlegm... even packing up the cars a number of days later was extremely difficult because I could not catch my breath. The rest of our time at the lake house was brutal.

It is weeks later and I am still having difficulty breathing. I feel congested, crampy, and I am still experiencing varied breathing problems. I have been completely spent and exhausted since that incident. It feels as though life was sucked right out of me. At times, I can't help but wonder if I will ever get enough rest to recover enough energy to feel stable again.

Mentally... I am struggling with my list of personal rules for what I can do, can't do, should do, shouldn't do, and what I should avoid at all cost. Obviously, I must adapt this list of rules constantly and this incident has reinforced that I must re-evaluate this list every day.

Most surprisingly, however, I've learned that when the shit really hits the fan, I still can't manage to say, “I can't”, even though I should definitely say, “I can't”.

Emotionally... This, once again, has been the difficult one. What I thought was true, was not... is not. This causes some emotional turmoil.

I thought I could always say “I can't” in situations when my health and life would be hindered or jeopardized since developing this insidious illness. That being said, I am actually proud of the fact that regardless of my own struggles, disabilities and handicaps, I still refused to say “I can't” and instead chose to dive in, head first, to sacrifice for someone else. This sacrifice on the shoulders of a disabled person involves much more than any healthy person could even imagine or fully understand.

When it comes to my emotions, I'm proud of myself for my integrity... I'm angry at myself for jeopardizing my health and possibly even my life... I'm angry at my limitations... I'm angry I am now wrestling with my emotions over what is “right”... I'm confused over what is “right”... but, emotionally, I'm happy at least some part of my old self still exists... is still alive... and, I'm content knowing that this part of my old self which still exists is an honorable part of my old self.

Further convoluting my emotions is this new struggle with accepting the realization that I still have trouble saying “I can't” when I should. When I make a split-second decision such as I did a few weeks ago, the sacrifice is far greater today than it was when I was healthy and fit... the sacrifice and consequences are far greater today than I could possibly express. Yet, I still cannot say “I can't” in order to protect myself, my health, my life. Perhaps some sort of Pavlovian response is at play here... regardless, it has my emotions in turmoil.

The fact is, today, my health fails suddenly in far less strenuous situations... it doesn't take much to get me there... cascading swiftly into life-threatening anaphylaxis. My extensive spinal injuries flare far worse today than before causing inflammation and even causing my legs to stop cooperating with my brain. Bone and joint pain regularly gets to crippling levels. There is no doubt I am disabled and have serious limitations and I thought I understood these limitations completely. Now, I'm not so sure I understand this as intimately as I had thought.

This incident has proven that, in some ways, I am indeed still the same man I was when I was healthy. What has changed is the level of my abilities. More importantly, the consequences when I attempt to utilize these remaining abilities are dangerous for me and can even be life-threatening. “Sacrifice” for me today means much more than when I was healthy and fit. When I was healthy, there was, realistically, only a “slight risk” of sacrifice because I was so physically fit but, today, sacrifice is a given no matter what I attempt to do.

When I was healthy and in peak physical condition, there was rarely a time when I truly faced any consequences for putting myself in harm's way... I had the strength, agility, and speed needed as well as having a quick-thinking head on my shoulders to allow for a high probability of success. Possessing that innate ability to somehow sense people in need as the incident is just beginning to unfold helped tremendously too.

Today, however, the consequences of my sacrifices are far greater and there is a much higher chance of failure due to my physical disabilities and unpredictable health. Today, when I plunge myself into overdrive, my body will fail me. The question is to what degree? Will I experience only some debilitating symptoms or will I experience life-threatening anaphylaxis for the last time? Will I have the energy to survive the incident? Will this choice affect me for the rest of my disabled life?

I had thought that at this point of my life and stage of my health, that I would prioritize my standards to default to my own safety and well-being... for the sake of myself as well as for Sheila. Instead, when presented with an incident and a choice, I immediately chose to truly sacrifice my own health and well-being for someone else. This goes against the rules I had set up for myself as I stated at the beginning of this blog entry... and I truly hate going against my own rules!

It is very clear to me today that there is still a part of me... the old me... down deep inside... kept securely just for emergencies... that is indeed a part of the person I once was... That is the man I always was... and, apparently, it is the man I still am today despite the greater risks and personal sacrifice. It is not physical attributes which make the man. It is what we do with our attributes which makes the man.

Was this incident and my subsequent choice simply a case of old habits die hard? Was it somehow a part of destiny and being in the right place at the right time? Was it honor and a deep understanding of life? Is it simply integrity shining through?

Clearly, some turmoil... emotionally and mentally...

What I do know is that my actions enlightened me and reintroduced a part of me to myself. A part of me, almost forgotten, emerged from deep within me proving I am indeed still the man I always was... providing definitive proof that it is not physical attributes which make the man, it is what we do with those attributes which make the man.

On that day, a part of the old me was awakened in an instant and brought to life...

“Yes, I am a different person today than I was when I was healthy, but the man is the same.”

UPDATE:  Four months have passed since this incident at the lake house and I am still trying to recover to a relatively stable level. I'm still having great difficulty breathing. I'm still struggling with a lack of strength. Overall, my health has declined significantly and does not seem to be rebounding in the least. After four months, I am beginning to feel resigned to the fact that this may truly be the "new normal" for my health. If so, this proves my theory about the importance of effective energy management for those struggling with any chronic illness. When one's energy drops to dangerously low levels, it may be impossible to recover.