It started the day I heard Mr. Thomas would be touring -- the worry, the fear, and the hope that despite the effects of my illness I might be able to attend. You see, because of my gastroparesis, I cannot eat, and this causes all sorts of issues that most other people never have to experience. Every time I consider going to an event, I fear that I will be too sick to actually attend. I don't like dealing with that disappointment, but what I like even less is disillusioning the friends with whom I have looked forward to enjoying the evening. I have let them down so many times already that I am surprised they agree to include me in anything. But I have good friends, friends who understand and are sympathetic to my plight. They tolerate my shortcomings.
When I am 67 days away from the concert, I can pretty successfully ignore my worries and fears, but as the days fly by, it becomes more difficult. I know that during the week or two before the concert, I will have to eat less. If there is any chance of making it there, I must eat as little as possible so that the likelihood of nausea and pain on the actual concert day will be lessened. Food equals pain and nausea, and that equals missed events. So, I limit my already meager intake of sustenance even further. By concert week, I am pretty run down.
The night before the concert, I eat and drink practically nothing, and on concert day, I eat nothing at all, not a single bite, and drink only what is necessary to keep me from being dehydrated -- can't chance missing Mr. Thomas and disappointing my friends. I am drained from days of food deprivation, and this day is almost unbearable. I find I am shaky, dizzy, and weak. Every time I walk into the kitchen and see the food, I long to take just a bite. I make my family lunch, and I can smell the food. I want so badly to sit down with them and eat just a little. If I do, though, I will be in agony. I will get nauseous, be in excruciating pain, and likely bloat up to the size of a 9-month pregnant woman. I am miserable, but I am determined. I hardly ever go out, and I know I won't get this chance again anytime soon. I suck it up and move on.
I pick out an outfit and start getting ready to go. As I comb my hair (which continues to thin due to malnutrition), I take a good look in the mirror. I think I am hideous. I look like a skeleton. I barely recognize the person staring back at me, and I hate what I have become. I can comb her hair, put a nice outfit and makeup on her, but I cannot make her what she was a year ago. I cannot change this. It saddens me, but I do the best I can and try to convince myself that I won't scare small children with my appearance.
My husband and I decide to arrive at the venue a little early because I really would like to get a picture with Mr. Thomas. There is a slim chance of this, but I am willing to give it a go. It is scorching outside, and this adds to my misery. Hot, weak, and shaky -- not a good combination. My husband helps steady me. The security guards at the venue are incredibly friendly and helpful (really!). They point to a spot where I can wait for Mr. Thomas, and I stand there for a bit until he finally arrives. (Yep, I got sunburn, too!) He is such a gentleman, so friendly, and he lets us take a picture. Yay! Success! Despite my hunger and weakness, the day is wonderful so far! We meet up with our friends and prepare for the concert.
I concentrate on appearing as and behaving like a "normal" person. I do not want anyone to know I am sick. I don't want my friends to worry. I don't want to take away from their enjoyment of the evening. I don't want to cause a scene. I silently pray that I will not vomit or faint or reveal in any way that I believe I am at the end of my rope here. I smile, laugh, and joke as if nothing at all is wrong. I am happy, and I want it to be that way, so I pretend, and sheer will-power gets me through.
I enjoy the opening acts (Vinyl Station, which is a fantastic group, and the Plain White Ts), but I am actually thankful when their portion of the show ends because I am wearing down quickly, and I want to see Mr. Thomas perform. When Mr. Thomas takes the stage, I disregard all the difficulties it took to get here. I ignore my weak, shaky legs, which I can no longer really feel and which can barely hold me at this point. I grab onto the stage floor in front of me and I thoroughly enjoy the next 2 hours. (I had to sit a couple of times, but, for the most part, I made it!) For just a brief spell, I forget all the agony and worries in my life. I delight in the time I have with my friends and spouse. I relax and let go of my pain for a bit. I know I will pay for this later, but at this moment, I do not care. It has been months since I have been out for anything other than a medical appointment or mundane errand, and I am having fun -- fun -- not something we experience in our house very frequently anymore. I am ecstatic.
All too soon, and yet way too late, the concert ends. As I make my way back to the car, leaning heavily on my husband to steady myself, I begin to think about the consequences of this evening out. Tomorrow I will pay for this dearly. I spent weeks preparing for this and many days depriving myself of even the basics, knowing that when this was all over, I would be in worse shape because of it. I know that tonight I will collapse, and tomorrow I will have to begin to try to erase the ill effects of this evening and the rough days leading up to it. I will eat what little I can tomorrow, and it will be harder than usual to tolerate it. I will begin to try to make up for the calories I have lost, but I know I will never be able to. It doesn't work like that. I will suffer from exhaustion and pain from pushing myself considerably beyond my limits. But most of all, I will face the mental anguish of knowing that my life must return to this "new normal" -- to this place where I am homebound, where I must spend every day trying to balance my physical need for food against the pain it causes me, where I must deny myself the basic needs everyone else takes for granted because I cannot live with the agony it causes me when I partake, and where I spend all my days online advocating for others who must live with this disease.
But tonight? Tonight I am "Overjoyed." :)
|All of us before the concert|
|My best friends and I|
|My husband and I|
|Mr. Thomas - from the front row!|
|Me with Mr. Thomas 2 years ago|