For as long as I’ve had to deal with having a genetic disorder (VHL – or Von Hippel-Lindau), which wreaks havoc on the body, I have occasionally had people kindly tell me that I’m so brave or strong. It is a strange thing to hear. Like most people, taking compliments is much more difficult than giving them, but I have never felt brave or strong. I have never felt like I’ve handled it well, especially as the problems became more intense over time. People have sometimes asked me how I have managed to get through these times. My answer has never wavered. I have always felt like I have survived the problem like most people deal with any personal or family crisis. What does one do when they lose a loved one, or break their leg in a car accident, or struggle with chronic migraines, or whatever the worst thing that happens to them may be? They find a way to cope and to persevere. I never felt like my issues were any more tragic or severe than anyone else’s. It is simply a different crisis.
However, it is the ongoing nature of the VHL syndrome that I do not feel like I have dealt with very well. The older I get, the more I realize and lament how I have allowed it to control me, instead of me taking charge of it. Sure, I’ve mostly kept on top of my continuing annual scans that monitor the kidneys, pancreas, the brain and the spinal cord, as I promised my mom I always would not long before she passed away from this disorder. I have kept my regular appointments with my specialist doctors to check hearing and to make sure my retinas stay clear of tumors. I ask all of the questions that need to be asked about improving my health and what I need to do to manage symptoms and prevent emergencies that could result. I have done this with little question like a programmed robot over the last 28 years and will continue to, despite being absolutely sick to death of visiting doctor’s offices and being filled with radiation and poisonous contrasts from these scans. What I haven’t done well, is deal with it emotionally. When it has come time to go in for some awful surgery, I have always gone into some sort of zone where I feel almost nothing inside. Sure I feel the aches and pains from the procedures, but I go through these events as if I’m doing a job that I don’t really care for. It is just something that needs to be taken care of before I punch out for the day. I have also let these momentary life halting occurrences truly stop my life. So much so, that I have ended many really good things in my life, like a burgeoning relationship, or a great chance to intern at a highly regarded professional recording studio, just to go take care of the latest disaster. But I never go back to a life with growing potential; instead I go back to life in the daily grind and forgo those potential dreams ignoring the previous achievements and strides. The older I get, the clearer this has become to me. When I hear someone say that I’m courageous, it only reminds me of the coward that I truly am.
I am trying to examine the reasons behind this, and it has become more and more apparent that I need to change this pattern – a pattern that has become such a part of me, that I struggle to see it until after I sabotage myself. There’s no way to know how my life or my level of satisfaction with life would be different, if I had returned to school after each time I had to take time off, or if I had attempted to keep friendships and relationships alive through these bypasses. However, it’s the idea that I have allowed opportunities to go by the wayside that has often filled me with regret and sadness. There’s a biting feeling that I am always missing something, especially since I am not very happy with many aspects of my life. I am unhappy and uninspired with my work; I live alone, struggle each month to get by financially and I don’t feel like my life is heading in a direction that will change this course. I do try to make changes as my frustration grows and sometimes I find temporary relief, but in the end, I never feel like I’ve gained any ground. I truly believe that this feeling of futility stems from my habit of starting from scratch each and every time my body decides to go haywire. I have allowed my health issues to control my life so much that I have not ever dedicated myself to long term goals, always waiting (as an excuse) for the foot to drop so I can stop whatever progress I’m making and go back to my life in medical institutions, where someone else can take care of me. I decided as a 13 year old that I would never have kids of my own, based on the genetic aspect of VHL, and not surprisingly, this kind of stern decision has affected my ability to find loving companionship and to maintain them. It’s as though I’ve become afraid of success, because I’m afraid that this disorder will someday take it away, so instead I subconsciously choose to live with mediocrity – a place I may well have found myself in no matter what paths I’ve chosen along the way – but it feels like I’ve taken the coward's way out.
All of this self examination has become stronger than usual of late as a small health scare hit me within the last few weeks, which coincided with me developing a major crush on a woman who I was lucky enough to meet and get to know a short time before. It has all felt eerily reminiscent of last summer (see previous posts Fear of the Weather and Numb) when I felt mysteriously physically terrible, while pining for my doctor’s receptionist (who I still see on a regular basis as my appointments and tests increase with these new issues). It took this latest development to notice that nearly every time in my life that I have had a downward change in my health status, from the very serious (dangerous brain surgery to losing my kidneys) to the much smaller issues that can be dealt with through therapies or medication changes, that I have attached my hopes and dreams to the ideal of some unsuspecting woman who I find very appealing at the time. I’m certain that those women have been a distraction to avert my focus from my fear of the unknown my tenuous health status creates, and they represent what I feel I am missing when I am set to confront those fears – companionship and support, but it has yet to go well. It is no surprise to me that these advances have all failed. Besides being pretty unappealing in general, my history of trying to win over women have most frequently happened when I have been desperate and scared and even more unappealing than usual. Again, I am allowing my health problems to dictate a path toward failure or mediocrity or loneliness or unhappiness. However, one would want to look at it. My hope is that recognizing this self destructive direction is a sign that maybe I can start to make more positive decisions and maybe for once start seriously planning for a future.
It is almost time for the LPGA to return to Portland, along with the vacation that I take to allow full immersion into that world. Maybe it’s time to take myself seriously and start introducing myself to the right people and make an effort to be the Admiral of Awesomeness that I know I can be. It’s time to dream again and to stop allowing myself to give up so easily.
