Monday, November 19, 2012

What To Do If You Find Yourself Limited

There are many things that can happen to you that limit your ability to do certain things or activities.  No one ever wants to admit that they are getting old.  That they physically are unable to do the things that they once were able to do.  It can even happen to a younger person due to illness, disease or an accident.  Hell we have people that fought in Vietnam, Korea or even in the recent and past Gulf conflicts that were injured, may have lost a limb, or been injured and now are physically impaired.  So what happens if something that you love and are use too has been taken away from you? That there is no way that you can ever be able to do that activity or function again.

Here let me digress a minute and fill you in on some rather personal information, some of you may already know, but here goes anyway, my big dark secret and a fear that I have been carrying around since June.  On June 13th I went in to the hospital to have another bowel resection, they were supposed to remove the colostomy that is acting as a mucus fistula and try and eliminate the ileostomy at the same time.  Now, this would have been wonderful and a dream come true.  But the reality of the situation is that there has been too many surgeries, too much inflammation, scar tissue and adhesions that have built up because of those surgeries, not to mention all the damage done to the tissue and the pelvic cavity from the radiation treatments.  What was discovered is that as soon as the scalpel starts cutting the abdominal wall, my blood pressure drops to dangerous levels, my breathing becomes erratic and my heart rate declines and my body starts to flat line.  Meaning that if they were to continue the surgery I would have died without any chance of revival.  This was the end of my dream and hope of finally being a whole and normal person.  I have been told recently that neither of the surgeons that have handled my situation in the past were willing to open me back up under any circumstance.  That it would take a skilled team of professionals to handle any further surgery that I may have.  Unfortunately in October it was discovered that the stricture that developed when they fused the two sections of colon back together has grown closed and that I would have to have another surgery.  This surgery is going to be extremely risky and may actually end my life. However, it has to be done, the mucus fistula is not working like they thought it would and fluid continues to build up on my pelvis.

Now, the reason why am telling you all of this is because of the simple fact that the colon has grown totally closed where it was fused is what is causing the fluid to build up. It also precludes me from having any type of anal penetration.  Further, the surgery during the emergency surgery that was performed in March, I was cut open from my breast bone down to my groin. Now I am talking all the way down to the penis, because of how deeply I was cut and the way that the muscles grew back together an inch or more of my penis is now indented. Which means that the length of it is now noticeably shorter.  This for the most part will preclude me from having sex with most gay men, due to the scarring and the length.  So overall in my mind I would have to say that sex for me is now completely finished, over and never to be had again. Seriously, this is a daunting proposition for me, because as people from my past can attest I love sex, it was an activity that I actually was pretty good at and have had some considerable practice at.  No I wasn't promiscuous or anything like that, but there was a time and a place where sex was something that I literally breathed.  This is just one example out of many others that I can throw at you. My mother had a friend named Jeanette, who lived to be 91 years old.  Up until she was 89 she was very active and vigorous in her daily activities and in doing yard work.  She got sick in her 90th year her, she suffered terribly from arthritis and COPD and various other factors that took her mobility and energy away.  However, she still demanded to take care of herself, lived by herself and up until her death held a license and owned a car, though like I said when she turned 90 she really couldn't drive anymore because of macular degeneration of her eyes.

In her case she missed doing the physical things, she was used to taking care of herself and her house. She prided herself on her ability to do those things and the weaker she got the more frustrated she would get. I actually moved home to help my mother take care of her that last year that she was alive, I drove everywhere and cooked and did as many things as I could for her so that she didn't have too.  I enjoyed helping her, but one day in January of 2010 she looked at me and asked me if she was a burden, how she wished that she could just die because she felt like she had to rely on others to do the most basic things and it was hard for her to admit that she was just not able to do everything by herself. My answer surprised her, I didn't think she was a burden at all, and I actually enjoyed the time I got to spend with her.  I learned things about my life and why I cared about people so much.  In a way, my limitations brought me to the realization that I may not be able to do all the things that a normal male of 40 can do, but there are other things, and that I have found someone that accepts and understands my limitations and loves me anyway makes all the difference to me in the world.  I have channeled my energy and passion of sex into caring and helping others. It has pushed me out there into the world to talk to others about my illnesses, limitations, expectations and how I handle them.  I have begun volunteering and helping others in a way that is rewarding and fulfilling.  However, I have found that being candid with others about my illnesses, and limitations has made it easier for me to accept and move past them.

What I have done is found another outlet for my pent up anxiety and frustration.  I remember Jeanette telling me that it is the simple things in life that brought her pleasure, and she would needle point or crochet for hours.  Since she couldn't carry or lift things anymore, or push the mower or plant a full garden, she took joy in the things she could still do, instead of planting a full garden she planted herb gardens in her window.  Planted strawberry plants in planters by her front door, she would crochet or needle point to keep her hands busy and her mind working on what she was doing. She occupied her time by things that she could still do that made her happy.  The concept I am trying to bring forth to you, is it is possible to turn and find alternative activities to do to compensate for those abilities and things you can no longer do.  I have a great mind and a terrific imagination, and I have figured out ways to compensate for my physical ability with activities and things that I can do.  This helps me rid myself of the anxiety I felt, it also lessened my feelings of inadequacy and by talking about it to others, and writing in my blog has made it something that I can almost accept totally and move on. I still have feelings of anguish over my crushed dream of being made whole, but I think in time those too will pass and vanish.  It also helps that I have found someone that cares enough about me to tell me that it doesn't matter to him, that we will face it together and will work out a solution.  Up until today, I had been keeping it from him, but when I told him my fears, he said the right things, and that it didn't matter that it was me he wanted, that it was me that has inspired him and made him a better person, but you wanna know the truth of the matter, maybe it is that we inspired each other and have given each other hope for a better life, and a happier one then we have known before.

Ladies and Gentlemen, I have looked death in the eye several times this year, and it scared me, but somehow, I knew it wasn't my time to go yet.  But it brought into sharp focus my limitations and abilities, it also made me intensely aware of the fear I had hiding within myself. Just like Jeanette, I had begun to feel like I was a relic, no longer useful or productive and that I wasn't going to be wanted and desired by anyone.  Now, with that being said, those that truly know me can attest that nothing gets me down for long so I have bounced back and I have shifted my focus to what I can do, what makes me happy, what am I passionate about that I can pour my energy and my life into.  I have come to understand that having a terminal illness doesn't mean that you are going to die right away necessarily and that there is life after being diagnosed.  As I said at the beginning of this entry, there are just circumstances and events that are beyond our scope of control that can severely impact our lives and limit our abilities.  When that happens, we can't let the anguish and depression hold us back, we have to face those limitations without fear, using our mind and creativity and imagination to find ways to compensate or even supplement the loss.

Now I am fully aware that there is going to be a period of time when your mind and emotions are not going to deal with this rationally.  You are definitely going to go through the 5 stages of grief and remorse and will have to weather that storm, but eventually after you have passed through that you will find other activities and things that will help you take your mind off the limiting ability.  I have found that humor helps me deal with my situation and allows me to be perfectly frank and candid about my situation.  When I am talking to others, or filling out applications, and it comes to the question of sex, I say well I am a plant, I am neither male of female, I am asexual how would you like me to answer this question.  Or if they ask it another way, I say no not right now I am too sore, but maybe when I heal up we could attempt.  Levity and humor make the situation tolerable, and opens the door for me to talk to others about my illness and how it has actually affected me.  You never know where personal encounters are going to take you, or who else might be dealing with a similar situation and have been harboring the guilt and anxiety within themselves and has had no one that they can talk to or even laugh about it with.  My friends let me tell you that life is too short to stay quiet, get out there tell your story, embrace life and living and trust me you will be rewarded. Both emotionally, physically and spiritually.  I find the greatest joy in meeting new people and experiencing life through their eyes. Because as I have told you before we each feel, experience and see things differently, and if you take the chance to walk in someone else's shoes, guess what you might get blisters or sore toes, but you are also going to have a greater understanding of who that person really is.

My advice to you my friend is don't give in to despair, anguish, anxiety, guilt or any of the other hundreds of emotions that you might be feeling, don't wallow in self-despair and pity, change the variables, change the game, and like I told you yesterday you can change the way you think and react to things.  Find something new and different to do, find a new outlet, hobby or release that you are comfortable with, enjoy and make the change. Again, I will tell you if I can do it so can you.

As always my hopes and dreams are with you,

Uncle B