8/28/10
Woke up to a beautiful morning here in the Northeast! The sun is shining...birds are singing...kids are playing...coffee is brewing...
My thoughts are of my Mom. Tomorrow would have been her 63rd birthday. I really can't believe that it's been almost 4 years since her passing. She was so young and taken from us too soon!
It's hard to explain to someone who hasn't lost a parent the type of void that is left behind. Growing up, parents are one of the "constants" in our lives - like the sun, moon, stars, etc. We develop a sense of security knowing that these things will always be there. After all, we've never experienced our lives without them - it's inconceivable! Until it happens to you...
The loss of a parent strikes at a the very core of a person. We are forced to accept another level of reality that we never could have prepared for. The innate security that we've come to rely on is threatened and our perspectives on life are irrevocably altered. I recall someone telling me that the 1st year after the loss of a parent is the hardest. I also recall thinking that they were full of crap! After all, how would I ever find my way out of this darkness that now consumed me? But, it happens. The feelings of longing and loss never go away. But, after you've experienced all of your "firsts" without your parent, it somehow gets a little easier. Though, that first year SUCKS!!!
I always felt that there was a special place in my Mom's heart for me! We definitely had a unique connection. I can still feel her love and pride to this day. If only she could see me now and share in all of the progress that I've made over the past several years! There's not a doubt in my mind that she is one of the forces behind my healing! My angel in heaven...
We never had a chance to really talk about how my hypospadias affected her. On the rare occasion that we did talk about it, I was usually consumed with the historical facts and events of that time. I've often wondered if she felt guilty for me being born with hypospadias - like she was somehow responsible for it? I'm sure she did...and it breaks my heart! I wish we would have had that conversation! The thought of her silently carrying around that guilt kills me! What I wouldn't give to be able to tell her that I don't blame her and it wasn't her fault...
So, for anyone doing battle with a demon, my message is - communicate! Parents, talk with your kids! Kids, talk to your parents! The parent-child relationship is never smooth and it constantly challenges us! But, sadly, this is not a constant (in the physical sense). Don't take each other for granted. And, don't wait till "tomorrow" because life can change quickly and "tomorrow" may never come.
So, talk to each other...love one another...and make the most of today!
Saturday, August 28, 2010
Thursday, August 26, 2010
Entry 7
8/26/10
I've missed my blog!!! The past 5 days have been SO busy, I haven't had a chance to set aside enough uninterrupted time to dedicate to it. So, I'll apologize in advance as this may get long; there are several things that I'd like to share from the past several days...
Thing 1:
Last Sunday was a cold, overcast, dark, rainy day in the Northeast. It was a day that was perfect for blowing off all responsibility, staying in pajamas, and curling up on the couch to watch movies or get lost in a good book! I LOVE days like this when I can actually appreciate it in the way it was intended. But, my conscience got the best of me - we really ought to go to church...we really need to go school shopping (ugh)...
As we pulled into the church parking lot, I noticed the sign by the road that read "Hidden Halves." As someone very conscious of the duality that I've developed because of my demon, I silently chuckled to myself and thought, "This should be interesting." Little did I know but God had brought me to church that day so he could give me a good "talking to." I am convinced that my pastor was the mouthpiece for a divine message that applied to the everyone in the congregation - but had a higher level of significance for me! In fact, at times, I felt as if the congregation disappeared and I was receiving a message that was specifically intended for me.
The message??? That we all have two halves - the one that we show the world and the one that we keep hidden. The half that we show the world exemplifies confidence, happiness, love, and morality. The other half we keep hidden because the secrets that we keep are so painful and horrible that no one would ever be able to understand our struggle or accept us. Pretty "spot on" for a hypospadian - well, this one anyway! He went on to describe a typical conversation where you ask someone how they are doing and they respond, "Never better!" even though they are at the end of their rope. Engaging in daily battle with my demon, I've been the "never better" guy more times than I care to count! The pastor went on to offer a new perspective: God wants our whole selves - not just the "good" half. He suggested that, by revealing our hidden half, we develop a greater connection with our higher power, attain a greater level of peace, and perform greater acts of healing for our fellow man.
From my experience working with HEA - this is DEFINITELY true!!! Over the past few years, I have challenged myself to share more of my "hidden half" with others. I started with my "hypospadias brothers;" each time I shared more of my true self with another, I felt a little more whole, peaceful, and secure. The cumulative effect of these conversations is significant. Although the battle with my demon is a daily occurrence, I continue to get stronger all the time. They say that war is won through a series of small battles - I'm gaining ground every day! I can honestly say that I am much less of an emotional cripple now than I was three years ago. It's been a positive cycle for me; the more I open up and share -the stronger I feel to open up and share more! I've even been able to see how my sharing more with others has had a positive impact on them. Knowing that my pain can somehow make life easier for others makes it more tolerable and worthwhile...
It was clear to me that I needed to share my story with my pastor. I can feel the momentum of my "mission" growing exponentially! There are forces at work here that are greater than myself. After service, I thanked him for his sermon and informed him that I felt he was used as a vehicle to provide me a special message. He was intrigued by my comment but it wasn't the time or place to really get into it with him; so, I told him I'd send him an email with my blog.
As luck would have it, I was at church for an Administrative Council meeting on Tuesday. Following the meeting, he approached me and we talked. I shared my story with him. He "got it." I was embraced with understanding, compassion, acceptance, and admiration. He called me a "wounded healer" and was impressed at how I could take my pain and use it as a tool to help others.
"Wounded healer." It feels fairly appropriate. If sharing my pain can help make life easier for others, then it makes it all worthwhile...
Thing 2:
While back to school shopping on Sunday, the inevitable occurred - half way through the store, the kids had to go to the bathroom! Public restrooms - just what every hypospadian enjoys (yes...that was dripping with sarcasm)! As my son and I walk past the line of urinals and toward the large stall, he comments he doesn't like using "those toilets" (meaning the urinals). He goes on to say that the reason for this is that he doesn't really know how to use them properly - he usually has to drop everything to his ankles in order to use it. A shot to the heart...
As a hypospadian father with a son, I've always worried about teaching him the "manly way to urinate." How could I teach him what is normal if I'm not normal? Other men likely teach by demonstrating. That isn't an option for me. Other men may be more open with their bodies with their sons...not me. What kind of impact would this have on him??? I've often wondered if my demon would eventually find a way to make me feel like a failure to my son in this regard...well, he finally found a way.
I couldn't address my son's concern at the time; we still haven't resolved it yet. Guess I'm still a little stunned. My demon can assault me all he wants but I can't allow him to attack my son!
Ugh! I need to figure out how to respond to this...
Thing 3:
I've been in touch with my doctor this week. My pre-admission testing is scheduled for 9/9 and surgery is 9/16. It's likely going to be outpatient surgery and I just learned that recovery will be about 7-10 days.
I haven't started getting overly anxious yet - though it's always in the back of my mind and focusing on things that need my attention is more of a challenge. I think the month of August will help me keep the anxiety at a distance. Once September comes, this will likely change!
Whew! Ok...I think I'm caught up now.
I've missed my blog!!! The past 5 days have been SO busy, I haven't had a chance to set aside enough uninterrupted time to dedicate to it. So, I'll apologize in advance as this may get long; there are several things that I'd like to share from the past several days...
Thing 1:
Last Sunday was a cold, overcast, dark, rainy day in the Northeast. It was a day that was perfect for blowing off all responsibility, staying in pajamas, and curling up on the couch to watch movies or get lost in a good book! I LOVE days like this when I can actually appreciate it in the way it was intended. But, my conscience got the best of me - we really ought to go to church...we really need to go school shopping (ugh)...
As we pulled into the church parking lot, I noticed the sign by the road that read "Hidden Halves." As someone very conscious of the duality that I've developed because of my demon, I silently chuckled to myself and thought, "This should be interesting." Little did I know but God had brought me to church that day so he could give me a good "talking to." I am convinced that my pastor was the mouthpiece for a divine message that applied to the everyone in the congregation - but had a higher level of significance for me! In fact, at times, I felt as if the congregation disappeared and I was receiving a message that was specifically intended for me.
The message??? That we all have two halves - the one that we show the world and the one that we keep hidden. The half that we show the world exemplifies confidence, happiness, love, and morality. The other half we keep hidden because the secrets that we keep are so painful and horrible that no one would ever be able to understand our struggle or accept us. Pretty "spot on" for a hypospadian - well, this one anyway! He went on to describe a typical conversation where you ask someone how they are doing and they respond, "Never better!" even though they are at the end of their rope. Engaging in daily battle with my demon, I've been the "never better" guy more times than I care to count! The pastor went on to offer a new perspective: God wants our whole selves - not just the "good" half. He suggested that, by revealing our hidden half, we develop a greater connection with our higher power, attain a greater level of peace, and perform greater acts of healing for our fellow man.
From my experience working with HEA - this is DEFINITELY true!!! Over the past few years, I have challenged myself to share more of my "hidden half" with others. I started with my "hypospadias brothers;" each time I shared more of my true self with another, I felt a little more whole, peaceful, and secure. The cumulative effect of these conversations is significant. Although the battle with my demon is a daily occurrence, I continue to get stronger all the time. They say that war is won through a series of small battles - I'm gaining ground every day! I can honestly say that I am much less of an emotional cripple now than I was three years ago. It's been a positive cycle for me; the more I open up and share -the stronger I feel to open up and share more! I've even been able to see how my sharing more with others has had a positive impact on them. Knowing that my pain can somehow make life easier for others makes it more tolerable and worthwhile...
It was clear to me that I needed to share my story with my pastor. I can feel the momentum of my "mission" growing exponentially! There are forces at work here that are greater than myself. After service, I thanked him for his sermon and informed him that I felt he was used as a vehicle to provide me a special message. He was intrigued by my comment but it wasn't the time or place to really get into it with him; so, I told him I'd send him an email with my blog.
As luck would have it, I was at church for an Administrative Council meeting on Tuesday. Following the meeting, he approached me and we talked. I shared my story with him. He "got it." I was embraced with understanding, compassion, acceptance, and admiration. He called me a "wounded healer" and was impressed at how I could take my pain and use it as a tool to help others.
"Wounded healer." It feels fairly appropriate. If sharing my pain can help make life easier for others, then it makes it all worthwhile...
Thing 2:
While back to school shopping on Sunday, the inevitable occurred - half way through the store, the kids had to go to the bathroom! Public restrooms - just what every hypospadian enjoys (yes...that was dripping with sarcasm)! As my son and I walk past the line of urinals and toward the large stall, he comments he doesn't like using "those toilets" (meaning the urinals). He goes on to say that the reason for this is that he doesn't really know how to use them properly - he usually has to drop everything to his ankles in order to use it. A shot to the heart...
As a hypospadian father with a son, I've always worried about teaching him the "manly way to urinate." How could I teach him what is normal if I'm not normal? Other men likely teach by demonstrating. That isn't an option for me. Other men may be more open with their bodies with their sons...not me. What kind of impact would this have on him??? I've often wondered if my demon would eventually find a way to make me feel like a failure to my son in this regard...well, he finally found a way.
I couldn't address my son's concern at the time; we still haven't resolved it yet. Guess I'm still a little stunned. My demon can assault me all he wants but I can't allow him to attack my son!
Ugh! I need to figure out how to respond to this...
Thing 3:
I've been in touch with my doctor this week. My pre-admission testing is scheduled for 9/9 and surgery is 9/16. It's likely going to be outpatient surgery and I just learned that recovery will be about 7-10 days.
I haven't started getting overly anxious yet - though it's always in the back of my mind and focusing on things that need my attention is more of a challenge. I think the month of August will help me keep the anxiety at a distance. Once September comes, this will likely change!
Whew! Ok...I think I'm caught up now.
Saturday, August 21, 2010
Entry 6
8/21/10
It's been a crazy end to the week! 11 hour days are for the birds... lol
I got a call back from the doctor's office mid-week and was SO thankful to hear that he is planning on repairing my fistula!!! Though, the nurse did qualify that by stating that it will all depend on what the doctor sees once I'm in the OR.
So, it looks like I'm in for a cystoscopy, fistula repair, and the removal of this mass...
I have lived my entire life with this fistula. It has been my demon's biggest weapon and he uses it against me every chance he gets! It's been a daily reminder that I'm "not like other guys." After all...how many guys do you know that void out of 2 holes in their penis??? Just thinking about the possibility that this fistula could be resolved in the near future brings me to the edge of tears!
I am so full of hope right now! It's a little strange knowing that I will not realize if the doctor was able to perform that part of the procedure until the recovery room. But, I'm choosing to remain optimistic! It WILL be done! There's no room in my life right now for negative thoughts - I've got to remain positive! And, if anyone is willing to send some additional positive thoughts or prayers my way, I'll gratefully accept them!
This is such a significant time for me right now. I have often thought of what life would be like without this fistula but never thought that it could be a reality for me. During a visit with my doctor a couple years ago, he advised against surgery due to the amount of existing scar tissue and my morbid obesity. Not that I'm glad that I have additional symptoms now but I do see this as an opportunity to attain a level of peace in my life that I have not been able to feel before. God, I hope this works!!!
Not sure if I mentioned this before, but I am planning on writing a comprehensive book about hypospadias. For something so common, it is UNACCEPTABLE to me that there is still so little awareness and so much isolation! I am on a mission! And, I'm developing a growing addiction for writing. It seems as the stars are aligning for me with this project; I'm experiencing that rare overwhelming sensation of confidence - like my mission is in alignment with God's plan. I cannot fail! There is something inside me that is longing to be shared with the world.
Brace yourself...here it comes!
It's been a crazy end to the week! 11 hour days are for the birds... lol
I got a call back from the doctor's office mid-week and was SO thankful to hear that he is planning on repairing my fistula!!! Though, the nurse did qualify that by stating that it will all depend on what the doctor sees once I'm in the OR.
So, it looks like I'm in for a cystoscopy, fistula repair, and the removal of this mass...
I have lived my entire life with this fistula. It has been my demon's biggest weapon and he uses it against me every chance he gets! It's been a daily reminder that I'm "not like other guys." After all...how many guys do you know that void out of 2 holes in their penis??? Just thinking about the possibility that this fistula could be resolved in the near future brings me to the edge of tears!
I am so full of hope right now! It's a little strange knowing that I will not realize if the doctor was able to perform that part of the procedure until the recovery room. But, I'm choosing to remain optimistic! It WILL be done! There's no room in my life right now for negative thoughts - I've got to remain positive! And, if anyone is willing to send some additional positive thoughts or prayers my way, I'll gratefully accept them!
This is such a significant time for me right now. I have often thought of what life would be like without this fistula but never thought that it could be a reality for me. During a visit with my doctor a couple years ago, he advised against surgery due to the amount of existing scar tissue and my morbid obesity. Not that I'm glad that I have additional symptoms now but I do see this as an opportunity to attain a level of peace in my life that I have not been able to feel before. God, I hope this works!!!
Not sure if I mentioned this before, but I am planning on writing a comprehensive book about hypospadias. For something so common, it is UNACCEPTABLE to me that there is still so little awareness and so much isolation! I am on a mission! And, I'm developing a growing addiction for writing. It seems as the stars are aligning for me with this project; I'm experiencing that rare overwhelming sensation of confidence - like my mission is in alignment with God's plan. I cannot fail! There is something inside me that is longing to be shared with the world.
Brace yourself...here it comes!
Tuesday, August 17, 2010
Entry 5
8/17/10
Ok...have I mentioned that patience is not one of my virtues???
Man! And I almost pulled it off this time! I was so close too! I said I was going to wait until tomorrow before I started stalking the doctor...
But...I broke down and called the doctor this afternoon. The anxiety of "not knowing" was growing so I needed to address it before I lost too much focus on my daily responsibilities. I utilized my acting skills and approached the conversation from the angle of "I met with the doctor last week and he said someone would contact me; maybe it was an oversight but I haven't been contacted yet." I guess I could have taken the more honest approach of "Look, I know I'm being a pain in your ass but I'm becoming a nervous wreck and am tired of waiting - do you have a surgery date for me yet?"
Assertiveness paid off today! The secretary on the other end of the phone advised me that my surgery is scheduled for 9/16! She also informed me of the usual routine - pre-admission testing, call the day before for my arrival time, etc. I felt bad for the poor woman as I rattled off my list of questions and information that I needed from the doctor; I realize that I can be a lot to deal with when I am on a mission! But, hey, I have a lot riding on this surgery and I need to make sure that I have all the facts. This may be unrealistic but I am praying that whatever needs to be done can be done during this one procedure (and not lead to other procedures). I always have been overly optimistic!
So, now I start grappling with the anxiety of "knowing." I'm happy with the date and am convinced that this procedure will not affect my ability to attend the HEA conference in October. Currently, my abundance of hope for a positive outcome is warding off any fear of the pain that is to come!
Ok...have I mentioned that patience is not one of my virtues???
Man! And I almost pulled it off this time! I was so close too! I said I was going to wait until tomorrow before I started stalking the doctor...
But...I broke down and called the doctor this afternoon. The anxiety of "not knowing" was growing so I needed to address it before I lost too much focus on my daily responsibilities. I utilized my acting skills and approached the conversation from the angle of "I met with the doctor last week and he said someone would contact me; maybe it was an oversight but I haven't been contacted yet." I guess I could have taken the more honest approach of "Look, I know I'm being a pain in your ass but I'm becoming a nervous wreck and am tired of waiting - do you have a surgery date for me yet?"
Assertiveness paid off today! The secretary on the other end of the phone advised me that my surgery is scheduled for 9/16! She also informed me of the usual routine - pre-admission testing, call the day before for my arrival time, etc. I felt bad for the poor woman as I rattled off my list of questions and information that I needed from the doctor; I realize that I can be a lot to deal with when I am on a mission! But, hey, I have a lot riding on this surgery and I need to make sure that I have all the facts. This may be unrealistic but I am praying that whatever needs to be done can be done during this one procedure (and not lead to other procedures). I always have been overly optimistic!
So, now I start grappling with the anxiety of "knowing." I'm happy with the date and am convinced that this procedure will not affect my ability to attend the HEA conference in October. Currently, my abundance of hope for a positive outcome is warding off any fear of the pain that is to come!
Entry 4
8/17/10
"You're not like the other guys."
I've heard this painful compliment so many times in my life! If they only knew just how right they were!
This phrase popped into my head yesterday during my commute into work. And, it's been hovering around in there since so I'm taking it as a sign that I should write about it...
It's true...I'm not like other guys - in more ways than one! Though, I've usually heard this said to me for my ability to empathize with others. You see, developing the ability to hear more than is actually being said and observe the behaviors of others to decipher their true intent was all part of my secret agent survival training. But, it's my ability to demonstrate empathy with others that has kept me from being detected and kept me alive in the trenches all these years!
I realized at a pretty young age that offering support to others would result in some form of acceptance for me - not that I ever really felt that I could take stock in that acceptance. After all...who could accept the real me? I'm a freak! But, on some level, the "lie" was comforting. And, hey, I was lucky to get what I could get. So, I continued to develop this skill. It's now one of my greatest tools of self preservation! The ability to demonstrate understanding for others, and provide them with comfort, is what keeps me off people's radar. No one would think to look any deeper into someone who is providing them with such a great service!
Looking back on conversations with others, they are typically one-sided (by my design). I couldn't trust my demon to anyone else - it was too powerful! It was my duty to protect others from it! I am convinced that people must have thought that I was so strong because I hardly ever shared any of my struggles with them. That's me...a "rock!" Oh, if they only knew the truth! I am no where near as strong as people think I am. Acting is also part of the secret agent survival training - didn't I tell you??
Regardless..."the Golden Rule" has been a great way to live! I do not resent my training and actually love to provide support for others! My hypospadias has motivated me all my life to treat others as I would want to be treated - if I let them! I am convinced that we all have deep seeded struggles and world is difficult enough. We need to support each other as much as possible! We are all in this together!
"You're not like the other guys."
While this is a painful reminder of a physical truth that I struggle with daily, I wouldn't trade my ability to empathize for anything! So...OUCH! And...THANK YOU!
"You're not like the other guys."
I've heard this painful compliment so many times in my life! If they only knew just how right they were!
This phrase popped into my head yesterday during my commute into work. And, it's been hovering around in there since so I'm taking it as a sign that I should write about it...
It's true...I'm not like other guys - in more ways than one! Though, I've usually heard this said to me for my ability to empathize with others. You see, developing the ability to hear more than is actually being said and observe the behaviors of others to decipher their true intent was all part of my secret agent survival training. But, it's my ability to demonstrate empathy with others that has kept me from being detected and kept me alive in the trenches all these years!
I realized at a pretty young age that offering support to others would result in some form of acceptance for me - not that I ever really felt that I could take stock in that acceptance. After all...who could accept the real me? I'm a freak! But, on some level, the "lie" was comforting. And, hey, I was lucky to get what I could get. So, I continued to develop this skill. It's now one of my greatest tools of self preservation! The ability to demonstrate understanding for others, and provide them with comfort, is what keeps me off people's radar. No one would think to look any deeper into someone who is providing them with such a great service!
Looking back on conversations with others, they are typically one-sided (by my design). I couldn't trust my demon to anyone else - it was too powerful! It was my duty to protect others from it! I am convinced that people must have thought that I was so strong because I hardly ever shared any of my struggles with them. That's me...a "rock!" Oh, if they only knew the truth! I am no where near as strong as people think I am. Acting is also part of the secret agent survival training - didn't I tell you??
Regardless..."the Golden Rule" has been a great way to live! I do not resent my training and actually love to provide support for others! My hypospadias has motivated me all my life to treat others as I would want to be treated - if I let them! I am convinced that we all have deep seeded struggles and world is difficult enough. We need to support each other as much as possible! We are all in this together!
"You're not like the other guys."
While this is a painful reminder of a physical truth that I struggle with daily, I wouldn't trade my ability to empathize for anything! So...OUCH! And...THANK YOU!
Saturday, August 14, 2010
Entry 3
8/14/10
Ironically enough, I spent the entire day yesterday with some of my fraternity brothers. Yes...me...a "frat boy!" Who would have thought? A boy who grew up strategically distancing himself from his male peers throughout his developmental years chose to immerse himself in the world of "normal" men at the age of 19! What was I thinking?
Maybe it was the "secret agent" in me? The challenge of successfully integrating with these foreigners - observing them...studying their culture...interacting with them - all without being detected! Kind of like espionage. LOL Prior to this time, I was able to safely keep my distance from this alien species while still under the protection of the family keep. I didn't realize it at the time but, along with my high school diploma, I was also issued a "passport" that would force me to explore the world of men!
And, a challenge it was! Being under the pledging microscope...living in their world 24/7 for 4 years...gaining acceptance within the male community... and developing some relationships that have lasted a lifetime - all while successfully keeping them from knowing the real me! It was not easy maintaining my "cover" while living in a mans world. At best, I could get to the point of feeling like I was 85% their equal; historically, I've always felt like I was less of a man. I could eat, drink, joke, slack, and lead with the best of them! However, there were 2 main areas where I always fell short - I continued to avoid the gym/sports and I was a sexual cripple.
Most of my fraternity brothers hit the gym on a regular basis or participated in some sport or other. Some even tried to get me to go with them (God bless them)! They simply had no idea how strong my demon was and just how powerless I was against it! During a time when most men are caring for and toning their bodies, I continued to abuse mine. After all...why bother, right? I'm already damaged goods. Nope, I only went to the athletic hall when I absolutely had to! And, I made damn sure that I selected PE classes that were not overly strenuous and would not require changing or showering!
The "down town" scene was probably the most painful of all. At a time when everyone is developing their best pick-up lines, honing their hook-up moves, and engaging in all kinds of casual sex, my demon taunted me. I was forced to watch but never participate. You see...for me, sex was a lose-lose. If I were to take that risk, approach someone, and get turned down, it would only reinforce the obvious - I am not worthy of being loved. However, if I were to take that risk, approach someone, and succeed...well, then I would be forced to expose my deepest secret first and then get rejected. I felt bad enough about myself and my body; I didnt need the assistance of others to help me feel worse! So while everyone else on campus was engaged in the right of passage known as hooking up, my demon continually reinforced my belief that I was less of a man and not worthy of this pleasure. So...I continued to drink excessively and over-eat. I may as well have a good reason for not being a hook-up king, right???
Wow...that took an unexpected negative turn! Sorry! This started off being a positive entry; lets get back to it...
Speaking of my college years - better sit down for this one - my major was psychology! Go figure, right? LOL I was not brought up with the expectation that I had to go to college. My older sister was the first in our family to go to college. If anyone set the expectation of higher education for me it would be her; and for that, Im eternally grateful! I was always a pretty keen observer of other people and their behaviors but studying psychology allowed me to understand the "whys" and the "hows" of it; connecting the dots if you will. And, it allowed me to apply that understanding to myself. I now had another layer of self-awareness and self-perception. For the first time, I was able to contemplate the question, "Maybe I am worthy of being loved?" Not that I actually believed it at that time, but allowing myself to consider it was a big step! So, after graduation, I focused on social work for children; I wanted to be the resource for them that I wished I had.
I guess the time spent with my fraternity brothers yesterday allowed me to reflect upon my college years - both good and not so good experiences. I am grateful that I had the fraternity experience with this group of guys; their acceptance had allowed me to fortify the foundation of my self-confidence before heading out into the world. I have learned so much from them! I am also grateful that I had the opportunity to go to college and study psychology. From that point forward, I have able to start viewing myself in a more loving and empathetic manner. It's a daily struggle for me but, at least, I feel that I have the weapons necessary to fight the good fight!
So...tonight...I am feeling grateful. :)
Ironically enough, I spent the entire day yesterday with some of my fraternity brothers. Yes...me...a "frat boy!" Who would have thought? A boy who grew up strategically distancing himself from his male peers throughout his developmental years chose to immerse himself in the world of "normal" men at the age of 19! What was I thinking?
Maybe it was the "secret agent" in me? The challenge of successfully integrating with these foreigners - observing them...studying their culture...interacting with them - all without being detected! Kind of like espionage. LOL Prior to this time, I was able to safely keep my distance from this alien species while still under the protection of the family keep. I didn't realize it at the time but, along with my high school diploma, I was also issued a "passport" that would force me to explore the world of men!
And, a challenge it was! Being under the pledging microscope...living in their world 24/7 for 4 years...gaining acceptance within the male community... and developing some relationships that have lasted a lifetime - all while successfully keeping them from knowing the real me! It was not easy maintaining my "cover" while living in a mans world. At best, I could get to the point of feeling like I was 85% their equal; historically, I've always felt like I was less of a man. I could eat, drink, joke, slack, and lead with the best of them! However, there were 2 main areas where I always fell short - I continued to avoid the gym/sports and I was a sexual cripple.
Most of my fraternity brothers hit the gym on a regular basis or participated in some sport or other. Some even tried to get me to go with them (God bless them)! They simply had no idea how strong my demon was and just how powerless I was against it! During a time when most men are caring for and toning their bodies, I continued to abuse mine. After all...why bother, right? I'm already damaged goods. Nope, I only went to the athletic hall when I absolutely had to! And, I made damn sure that I selected PE classes that were not overly strenuous and would not require changing or showering!
The "down town" scene was probably the most painful of all. At a time when everyone is developing their best pick-up lines, honing their hook-up moves, and engaging in all kinds of casual sex, my demon taunted me. I was forced to watch but never participate. You see...for me, sex was a lose-lose. If I were to take that risk, approach someone, and get turned down, it would only reinforce the obvious - I am not worthy of being loved. However, if I were to take that risk, approach someone, and succeed...well, then I would be forced to expose my deepest secret first and then get rejected. I felt bad enough about myself and my body; I didnt need the assistance of others to help me feel worse! So while everyone else on campus was engaged in the right of passage known as hooking up, my demon continually reinforced my belief that I was less of a man and not worthy of this pleasure. So...I continued to drink excessively and over-eat. I may as well have a good reason for not being a hook-up king, right???
Wow...that took an unexpected negative turn! Sorry! This started off being a positive entry; lets get back to it...
Speaking of my college years - better sit down for this one - my major was psychology! Go figure, right? LOL I was not brought up with the expectation that I had to go to college. My older sister was the first in our family to go to college. If anyone set the expectation of higher education for me it would be her; and for that, Im eternally grateful! I was always a pretty keen observer of other people and their behaviors but studying psychology allowed me to understand the "whys" and the "hows" of it; connecting the dots if you will. And, it allowed me to apply that understanding to myself. I now had another layer of self-awareness and self-perception. For the first time, I was able to contemplate the question, "Maybe I am worthy of being loved?" Not that I actually believed it at that time, but allowing myself to consider it was a big step! So, after graduation, I focused on social work for children; I wanted to be the resource for them that I wished I had.
I guess the time spent with my fraternity brothers yesterday allowed me to reflect upon my college years - both good and not so good experiences. I am grateful that I had the fraternity experience with this group of guys; their acceptance had allowed me to fortify the foundation of my self-confidence before heading out into the world. I have learned so much from them! I am also grateful that I had the opportunity to go to college and study psychology. From that point forward, I have able to start viewing myself in a more loving and empathetic manner. It's a daily struggle for me but, at least, I feel that I have the weapons necessary to fight the good fight!
So...tonight...I am feeling grateful. :)
Thursday, August 12, 2010
Entry 2
8/12/10
In re-reading my prior post, I realized that I should clarify something...HEA stands for Hypospadias and Epispadias Association, Inc. (http://www.heainfo.org/). My appologies for any confusion there...
Well, the phone didn't ring today! DAMN!!! I am normally a very patient person - but not with this! I want to have a date so I can start to mentally prepare. Until then, I feel like I'm in a state of limbo. Mentally, I realize that there is some coordination that has to take place on the medical end before this can be scheduled. Emotionally, my inner child wants to start throwing a tantrum! LOL I'll give them until next Wednesday to get back to me. If I don't hear anything by then, I'll start "stalking." :)
I am attending the 2010 HEA conference in San Antonio this October. I really need to be there and hope that this procedure can take place prior to that. Hopefully, this will all play out well and will not prevent me from attending. Even if the procedure needs to take place in several stages...God, just let me get to San Antonio! I need some time with my "brothers!" :)
In re-reading my prior post, I realized that I should clarify something...HEA stands for Hypospadias and Epispadias Association, Inc. (http://www.heainfo.org/). My appologies for any confusion there...
Well, the phone didn't ring today! DAMN!!! I am normally a very patient person - but not with this! I want to have a date so I can start to mentally prepare. Until then, I feel like I'm in a state of limbo. Mentally, I realize that there is some coordination that has to take place on the medical end before this can be scheduled. Emotionally, my inner child wants to start throwing a tantrum! LOL I'll give them until next Wednesday to get back to me. If I don't hear anything by then, I'll start "stalking." :)
I am attending the 2010 HEA conference in San Antonio this October. I really need to be there and hope that this procedure can take place prior to that. Hopefully, this will all play out well and will not prevent me from attending. Even if the procedure needs to take place in several stages...God, just let me get to San Antonio! I need some time with my "brothers!" :)
Wednesday, August 11, 2010
Entry 1
8/11/10
I am a mix of emotions right now. I met with my urologist this morning for an examination of some unusual symptoms...
I am a 41 year old male born with peno-scrotal hypospadias. I underwent 4 surgeries before the age of 5 years old. The outcome was a wide sub-coronal meatus (opening) and an unresolved fistula at the original meatal site. The only memory I have of these surgical experiences is the intense fear I felt while a black rubber ether mask descended upon my face - THIS is my earliest childhood memory. Interestingly enough, I have no other memories from my surgeries; I’m convinced I blocked them out. The unresolved fistula has prevented me from being able to use a urinal like other males.
I grew up in a small, rural, upstate NY community. My parents never really talked with me openly about my hypospadias. They loved me very much but I suspect that they were uncomfortable with it and, likely, didn’t want to make me uncomfortable by discussing it. Yet, somehow, I always knew that I was different from other boys; I also knew that being different would make me a “target.” As a result of my hyper-awareness (both of myself and my surroundings), I developed many strategies for self-preservation at a very early age. My main objective was to “fly under the radar” and not draw attention to myself. But, as a human (i.e. social) being, this wasn’t easy. To help me accomplish my goal, I developed 2 selves – what I call my “social self” and my “true self.”
I am the king of acquaintances! I can be extremely friendly with all kinds of people but never really belonged to any certain clique and never – ever – let anyone get too close. I developed into a keen observer; I would always take my time to assess people and my surroundings before approaching anyone or engaging in conversation – I still do! Whether it was playing “forts” in the woods, sports, or camping with other boys, I always had to be conscious of my difference and where the closest bathroom was. I never had to pee outside when the other boys did ;) but always seemed to find a reason to excuse myself back to the nearest location with a bathroom! I also became obese at a young age and used my weight to keep others at a distance. Toileting in school was like planning a bank heist – it had to be timed just right so that no one would see me going in, taking care of business, or going out! And, showering in the high school years…ugh! They say the “squeaky wheel gets the grease;” well, the opposite is also true. I made sure I was a “good” (i.e. low maintenance) kid and a decent student - this enabled me to keep my parents and teachers at arm’s length! I spent years developing a “social self” that was the epitome of a conservative, self-less, humanitarian. But, that’s my “mild mannered alter ego…”
Self-isolation has a heavy price but it’s what I used to protect myself from those who couldn’t understand me or wouldn’t accept me for having hypospadias. After all, growing up believing (until I was 28 years old!) that I was the only one affected by this…how could anyone understand or accept me? Only I could really understand what it was like and accept my “true self!” After all…who could really love a “freak?” So, most of my life has been spent withholding the real me from the world - keeping others at a distance…constantly assessing and reassessing how much of myself to share with others…making sure that people never get too close to the truth. It’s exhausting! And sad…knowing that those who love me don’t even know/love the real ME (because I haven’t let them)! Trust issues…yeah, I’ve got them!
Letting my wife “in” when I was 26 years old was the hardest thing that I had done up until then. We had reached a point when our relationship was either going to take the next step or I would need to end it (in the name of self-preservation). Behind a veil of tears and shaking uncontrollably…I disclosed my “secret” to another for the first time. To my surprise and relief, she responded with support and love!
Suspecting that we would be battling infertility (damn, I HATE being right!), I started asking my parents more questions about my surgeries. I also requested copies of my medical records for my hypospadias related surgeries. For the first time, I learned that my “birth defect” had a name – HYPOSPADIAS – and that I was not the only one in the world who was affected by it! There were others?? Who?? Where?? I’ve gone nearly 30 years and never had an inkling that anyone else could have had this! Needless to say…I was floored!
However, life got in the way (as it inevitably does) and it wasn’t until I was 38 that I started facing my personal demons. It took the passing of my Mom (at age 59) for me to realize that life is too short! It occurred to me that I lived the first half of my life controlled by the isolation and fear of my hypospadias! It was time for me to reclaim my life! My Mom was my main source of information regarding my surgeries, and now she was gone! I did gather the courage to talk with my Dad more about that period of my life. I was amazed to learn that my parents mortgaged our house to get the money needed to pay for my surgeries (as we did not have health insurance)! Words can't begin to express how much that act meant to me...that they would sacrifice what little they had - for ME! This is also when I found HEA. For the first time in my life, I felt like I belonged! For the first time in my life, I didn’t feel different! For the first time, I felt that others truly understood my fears, my shame, and my sadness. I had lived under the dark cloud of hypospadias for too long! I made a commitment to myself to learn as much as I could about my demon and challenged myself to reach out to as many “brothers” as I could. I am an open book to my “brothers” and try to lead by example. My new mission was to make sure that no other person grew up feeling (or currently felt) as I did – needlessly! That’s why I became actively involved in HEA! As I began accepting myself, I started a process of “selective disclosure” to introduce close family/friends to the real me.
It wasn’t until 3 years later that I finally started addressing my weight demon. Now that I was opening up about my hypospadias, I no longer need my weight to shield me from society. This year, I made another commitment to myself (and my family) – to become healthier! This meant losing weight and exercising more. Though, at 336 pounds, I knew I couldn’t do it on my own. On April 14th, I underwent gastric bypass surgery. I am now down to 255 pounds and walking 2 miles 5 days/week. I am now healthier than I ever recall being!
Which brings me to today…I scheduled this appointment with my urologist because I had noticed a long, thin mass “floating” under the skin on the underside of my penis; I first noticed this in March of this year. I also started to notice that I was starting to leak a little bit of urine. I had hoped it would just go away (like that would really happen). I got distracted with my gastric bypass surgery and recovery shortly after that. In June, I started noticing blood in my semen. Again, I had hoped that it would just go away (since that course of action was so effective the first time!). After a month, I was still seeing bloody semen. It was time for WebMD! Cancer showed up on my radar – not good! Yep – it was time to break down and make the Urology appointment! Upon my arrival at the office, my “white coat syndrome” was in full effect! My anxiety was high and it showed. I tried to convince myself not to assume the worst and to just be satisfied that I will finally be getting some answers. Following my examination, my Dr assured me that this did not appear cancerous. He informed me that men with hypospadias have a lesser chance of getting prostate cancer than other men due to the androgens involved with hypospadias. Well, at least there’s a silver lining to having hypospadias! Though, he also said that the mass and the leaking was concerning. He really couldn’t say for sure what it was (it could be "calcification"?) or determine the integrity of my previous surgical “repairs” without performing surgery to examine my urinary tract from bladder to meatus. I have a lot of scar tissue and he makes it clear that it will make the procedure more difficult. He also advises that he will request the assistance of the head Pediatric Urologic Surgeon (who I have researched previously and am very satisfied with) in the practice. I believe that surgery is the right course of action at this point. He said the office will be in touch to schedule the procedure.
As the day goes on, the mixed emotions start to rise within me. I’m terrified of the emotional triggers that this impending procedure can aggravate. Will this course of action bring on “flashbacks” from my earlier surgeries that I had previously blocked out? The physical pain is scary but the potential emotional fallout could be so much worse. I’ve always been in control and this surgery threatens that. On the other hand, I have reached a point where I need to have my hypospadias “repair” looked at again. I know that it’s unrealistic to expect that the new “Mr. Johnson” would be pursuing a new career in modeling – but I am praying that I will, at least, have an outcome that will allow me to urinate while standing. God…what I wouldn’t do to be able to use a urinal! Pretty sad, huh? LOL
So…now I wait for the phone to ring…
I am a mix of emotions right now. I met with my urologist this morning for an examination of some unusual symptoms...
I am a 41 year old male born with peno-scrotal hypospadias. I underwent 4 surgeries before the age of 5 years old. The outcome was a wide sub-coronal meatus (opening) and an unresolved fistula at the original meatal site. The only memory I have of these surgical experiences is the intense fear I felt while a black rubber ether mask descended upon my face - THIS is my earliest childhood memory. Interestingly enough, I have no other memories from my surgeries; I’m convinced I blocked them out. The unresolved fistula has prevented me from being able to use a urinal like other males.
I grew up in a small, rural, upstate NY community. My parents never really talked with me openly about my hypospadias. They loved me very much but I suspect that they were uncomfortable with it and, likely, didn’t want to make me uncomfortable by discussing it. Yet, somehow, I always knew that I was different from other boys; I also knew that being different would make me a “target.” As a result of my hyper-awareness (both of myself and my surroundings), I developed many strategies for self-preservation at a very early age. My main objective was to “fly under the radar” and not draw attention to myself. But, as a human (i.e. social) being, this wasn’t easy. To help me accomplish my goal, I developed 2 selves – what I call my “social self” and my “true self.”
I am the king of acquaintances! I can be extremely friendly with all kinds of people but never really belonged to any certain clique and never – ever – let anyone get too close. I developed into a keen observer; I would always take my time to assess people and my surroundings before approaching anyone or engaging in conversation – I still do! Whether it was playing “forts” in the woods, sports, or camping with other boys, I always had to be conscious of my difference and where the closest bathroom was. I never had to pee outside when the other boys did ;) but always seemed to find a reason to excuse myself back to the nearest location with a bathroom! I also became obese at a young age and used my weight to keep others at a distance. Toileting in school was like planning a bank heist – it had to be timed just right so that no one would see me going in, taking care of business, or going out! And, showering in the high school years…ugh! They say the “squeaky wheel gets the grease;” well, the opposite is also true. I made sure I was a “good” (i.e. low maintenance) kid and a decent student - this enabled me to keep my parents and teachers at arm’s length! I spent years developing a “social self” that was the epitome of a conservative, self-less, humanitarian. But, that’s my “mild mannered alter ego…”
Self-isolation has a heavy price but it’s what I used to protect myself from those who couldn’t understand me or wouldn’t accept me for having hypospadias. After all, growing up believing (until I was 28 years old!) that I was the only one affected by this…how could anyone understand or accept me? Only I could really understand what it was like and accept my “true self!” After all…who could really love a “freak?” So, most of my life has been spent withholding the real me from the world - keeping others at a distance…constantly assessing and reassessing how much of myself to share with others…making sure that people never get too close to the truth. It’s exhausting! And sad…knowing that those who love me don’t even know/love the real ME (because I haven’t let them)! Trust issues…yeah, I’ve got them!
Letting my wife “in” when I was 26 years old was the hardest thing that I had done up until then. We had reached a point when our relationship was either going to take the next step or I would need to end it (in the name of self-preservation). Behind a veil of tears and shaking uncontrollably…I disclosed my “secret” to another for the first time. To my surprise and relief, she responded with support and love!
Suspecting that we would be battling infertility (damn, I HATE being right!), I started asking my parents more questions about my surgeries. I also requested copies of my medical records for my hypospadias related surgeries. For the first time, I learned that my “birth defect” had a name – HYPOSPADIAS – and that I was not the only one in the world who was affected by it! There were others?? Who?? Where?? I’ve gone nearly 30 years and never had an inkling that anyone else could have had this! Needless to say…I was floored!
However, life got in the way (as it inevitably does) and it wasn’t until I was 38 that I started facing my personal demons. It took the passing of my Mom (at age 59) for me to realize that life is too short! It occurred to me that I lived the first half of my life controlled by the isolation and fear of my hypospadias! It was time for me to reclaim my life! My Mom was my main source of information regarding my surgeries, and now she was gone! I did gather the courage to talk with my Dad more about that period of my life. I was amazed to learn that my parents mortgaged our house to get the money needed to pay for my surgeries (as we did not have health insurance)! Words can't begin to express how much that act meant to me...that they would sacrifice what little they had - for ME! This is also when I found HEA. For the first time in my life, I felt like I belonged! For the first time in my life, I didn’t feel different! For the first time, I felt that others truly understood my fears, my shame, and my sadness. I had lived under the dark cloud of hypospadias for too long! I made a commitment to myself to learn as much as I could about my demon and challenged myself to reach out to as many “brothers” as I could. I am an open book to my “brothers” and try to lead by example. My new mission was to make sure that no other person grew up feeling (or currently felt) as I did – needlessly! That’s why I became actively involved in HEA! As I began accepting myself, I started a process of “selective disclosure” to introduce close family/friends to the real me.
It wasn’t until 3 years later that I finally started addressing my weight demon. Now that I was opening up about my hypospadias, I no longer need my weight to shield me from society. This year, I made another commitment to myself (and my family) – to become healthier! This meant losing weight and exercising more. Though, at 336 pounds, I knew I couldn’t do it on my own. On April 14th, I underwent gastric bypass surgery. I am now down to 255 pounds and walking 2 miles 5 days/week. I am now healthier than I ever recall being!
Which brings me to today…I scheduled this appointment with my urologist because I had noticed a long, thin mass “floating” under the skin on the underside of my penis; I first noticed this in March of this year. I also started to notice that I was starting to leak a little bit of urine. I had hoped it would just go away (like that would really happen). I got distracted with my gastric bypass surgery and recovery shortly after that. In June, I started noticing blood in my semen. Again, I had hoped that it would just go away (since that course of action was so effective the first time!). After a month, I was still seeing bloody semen. It was time for WebMD! Cancer showed up on my radar – not good! Yep – it was time to break down and make the Urology appointment! Upon my arrival at the office, my “white coat syndrome” was in full effect! My anxiety was high and it showed. I tried to convince myself not to assume the worst and to just be satisfied that I will finally be getting some answers. Following my examination, my Dr assured me that this did not appear cancerous. He informed me that men with hypospadias have a lesser chance of getting prostate cancer than other men due to the androgens involved with hypospadias. Well, at least there’s a silver lining to having hypospadias! Though, he also said that the mass and the leaking was concerning. He really couldn’t say for sure what it was (it could be "calcification"?) or determine the integrity of my previous surgical “repairs” without performing surgery to examine my urinary tract from bladder to meatus. I have a lot of scar tissue and he makes it clear that it will make the procedure more difficult. He also advises that he will request the assistance of the head Pediatric Urologic Surgeon (who I have researched previously and am very satisfied with) in the practice. I believe that surgery is the right course of action at this point. He said the office will be in touch to schedule the procedure.
As the day goes on, the mixed emotions start to rise within me. I’m terrified of the emotional triggers that this impending procedure can aggravate. Will this course of action bring on “flashbacks” from my earlier surgeries that I had previously blocked out? The physical pain is scary but the potential emotional fallout could be so much worse. I’ve always been in control and this surgery threatens that. On the other hand, I have reached a point where I need to have my hypospadias “repair” looked at again. I know that it’s unrealistic to expect that the new “Mr. Johnson” would be pursuing a new career in modeling – but I am praying that I will, at least, have an outcome that will allow me to urinate while standing. God…what I wouldn’t do to be able to use a urinal! Pretty sad, huh? LOL
So…now I wait for the phone to ring…
Subscribe to:
Posts (Atom)