I recently had what will hopefully be the last surgery on my mouth for awhile, and although I'm struggling to recover as quickly as I'd hoped, in many ways I'm feeling better and the outlook is positive. To give a quick explanation, the Oral Surgeon (the incomparable Dr. Jeremy Manwaring) took skin grafts from the roof of my mouth on both sides and used them to build up my lower gum tissue. Because I throw-up regularly, the roof of my mouth has been taking a long time to heal. Even with a mouth guard that covers the inflamed area, it is sore to the point that anything that touches it causes pain. As everyone is already aware by now, this means that eating or drinking by mouth is difficult, if not impossible, so the snowball begins and I quickly become dehydrated and malnourished. I run my feeding tube at the highest rate that I can stand, but because of my absorption and gastroparesis issues, I can't sustain myself with it alone, and it causes intense abdominal pain when I run it in too fast. So I end up doing what I've been doing all summer, laying in bad, slightly upright to help the nausea, but flat from the waist up so I don't hurt. Sometimes taking a deep breath momentarily takes my breath away. Wow, this sounds a bit like complaining to me...I hope that's not the way it's coming across.
Besides the pain and nausea, I guess the biggest thing that I'm feeling right now is discouragement. Not in the sense that I wish for anything different, but more that my body won't allow my mind to do what it wants. Where I genuinely feel blessed for every waking breath that I've had during the last five-plus years, I've mostly just been surviving. Now I'm at a point where I want to
live. I want my body to allow me to
want to get up and moving, and when I do, to hang in there long enough that I'm able to experience the wonderful moments in life that only come from being around people.....being in the world.....having a bigger role in this process. It's so hard to explain, I shouldn't even try. I don't expect anyone to completely understand what I'm trying to say, just as I will never know what it is like to be any of you. We all suffer in one way or another, and I by no means think that my suffering is any greater than anyone else's. After all, suffering is the human condition. We have to suffer to truly comprehend how amazing life can be. More than anything, I have learned this through my health trials during the last few years. It's taken a long and often difficult process, but it's all been worth it to me just for the things I've learned, if nothing else. I honestly wouldn't change a thing about any of it if it meant that I'd not be where I am at this very moment. I mean that.
Having a bit of alone time during the last few months has allowed me to reflect and work through things from my past- not just mistakes and transgressions, but mostly positive things. I've recalled things that I had completely forgotten about, little seemingly insignificant moments that made an impression on me, even if the other people involved were being impressed at the time by something else. It's an easy thing to do in our fast-paced world, and I know that it's happened to me too many times to count. Whatever the case, I have been blessed to have experienced many of those moments, again, too many times to count. I am more grateful for this than anything else I've ever experienced. I don't feel that I've done anything to deserve the many wonderful people that I have connected with. The connection with each individual person is unique and special beyond description. I don't like to refer to relationships as "deeper" than another, and it's not a matter of "good" or "bad" or "better" or "worse." There's the usual suspects, like my amazing family. There's the many incredible friends that I've made over the years, most of whom always had my best interest in mind. And of course there's the people that I've known for a long time. As far as I'm concerned, these people are family, and I love them as such. It's what life is all about, and I am blessed that I was born into the family that I was. This is truly a blessing, because there are a lot of people in the world that weren't as fortunate as I was. When you consider this, there's not a big difference between myself and any homeless or drug-addicted person in the world. In many ways, the difference is that simple. I was born on 3rd base and acted like I'd hit a triple. There's a lot of people that are handed a bat already down 0-2 in the count, with the bases loaded and 2 outs in the bottom of the 9th, behind 4-3. Despite this, a select few will rise above it all and knock the next pitch into the gap to score the winning runs in walk-off fashion. Others may draw a bases-loaded walk to tie the game. Sadly though, most people with two strikes against them from their moment of conception will strike out. My point is, I understand how fortunate I am to have the family and friends that I do.
But there has also been a small group of people (relative to how many people come in and out of our lives) that has been equally as important to me. They are the people that you come in contact with that stay with you for as long as you live. It may have only seemed like a moment at the time, but that time together can be every bit as powerful as your longest relationship. I have also been blessed with many of these people, some who I still have contact with, some who I don't. I am grateful for all of those that have had a positive impact on my life and who have helped me to grow as a human being. I'm certain that there are some that don't pay me any attention now, and they may not even know that they mean anything to me. I sincerely hope that is not the case. It definitely makes me want to reach out to a few of them.
In addition to all of this, I have even more to be grateful for. I can see a bright light at the end of the tunnel. The light has me excited for the future- which is a strange and new feeling for me, but one that I welcome with open arms. The fact is, I haven't looked ahead beyond the moment very much since this health journey began, so this process is proving more difficult than I would have expected. Although I always loved looking ahead, dreaming of what could be, and making plans, there's a simplicity that you find when your only focus is on the moment.
Regardless, this is a problem that I won't ever complain about having, and I honestly feel blessed because of it. My biggest challenge is keeping myself from getting carried away with making future plans (my "life-list" is getting long) so I am trying to find a happy-medium.
Through all of the health issues that I've been faced with during these last few years, there have been many things and countless people that have helped me survive, too many to name here. In fact, I'm probably going to have to write a book to explain them all. Until that happens, I wanted to share the one general theme that has resonated with me from the beginning- that thing being gratitude. The key to feeling happy and fulfilled is gratitude. Being grateful for all that you have been blessed with. Every little thing. In our culture of excess and competition, this is often easier said than done. I won't lie and say that I don't wish/hope for things- it's human nature to do so and I am very much a mortal being. In our world it's so easy to fall into the trap of desiring more, better, bigger, etc. Unfortunately when we are in this frame of mind, not satisfied with things as they are, it's difficult to recognize the things that we already have. We are led to believe that we will feel fulfilled when such-and-such happens- when we get married, buy the new toy, lose weight, or progress in our career- the list goes on and on. Focusing on all of these things that we think will lead to our happiness only makes us forget the many things that we are already blessed with. And consider this- if even the smallest thing would have happened differently, you may not be where you are now. Just my thoughts :)
I will continue to keep you all in my thoughts and prayers. Thank you for making a difference in my life :) I love you all and God bless you and your loved ones.
Talk soon.
J