Saturday, April 10, 2010

What I Look Like Just Doesn't Matter

I admit it. I now have a pot-belly. And it bothered me.

After being underweight for the past 2+ years, struggling with a lack of appetite and the associated difficulties in maintaining weight, since being on Ampligen for 2 1/2 months, hunger has returned!  But with it came a whole new set of problems for me.

The most obvious one is that my body looks weird to me now. Yes, I still have the skinniest legs in North America, and some years back, thanks to the gluten sensitivity and the "gluteal wasting" aspects of this disease, I lost my butt completely. I used to be an athlete, running 6 miles a day, doing squats and all sorts of weight lifting, and was pretty proud of my athletic buns. Not today.

My silhouette from the waist down, to quote Foghorn Leghorn, looks like "the highway from Ft. Worth to Dallas. No curves!"

My pants no longer stay up at all, regardless of how hard I yank my belt. Picture trying to put a belt on a solid marble smooth Roman column - that's my dilemma each day. No matter what you do, the belt just slides right to the ground. Smooth, straight, and shiny...there's just nothing there on the backside to hold it up!

Now slap on a papoose on the front side above the belt line and you have an idea what I saw in the mirror, to my horror, the other night. On the cellphone with my wife I screamed out, "Geez, I have a pot-belly!" I exclaimed. "I'm getting too fat!"  She of course said all the right things about "loving the man inside," and "being in love with more than my body," but it still bothered me, in the same way that it bothered me when I was way too skinny.

Two years ago, when the stock market was in the toilet and long before I started Ampligen, my business partner saw me in person after only talking on the phone for about a year, not realizing how skinny I had become.  I was down  to 167 pounds at the time, (I'm 6 feet tall) and until I saw the look on his face I wasn't real worried about it. But he looked so freaked out seeing my suit pants tied around my waist like Ellie May Clampet's jeans with a rope, and the lack of curves in my face, that he blurted out something like  "Man you're really skinny. Are you all right?" I think I deflected a little and said something like, "yeah, my weight goes up and down like the stock market," but his shock was noticeable to me. And was one of the ingredients in my decisions to come here to start Ampligen.

As it turns out, the fluctuation of my weight while fighting this disease might be a good stock predictor. I've charted my poundage over the past 2 years and have concluded that the bigger my belly, the higher the S&P average. I just completed my 22nd Ampligen treatment, and the Dow popped up over 11,000 yesterday, probably because I hate a whole strawberry cheesecake the night before. But get ready to sell; I'm going on a diet soon!

All kidding aside, the dietary and appetite challenges we face can affect more than just how we look. This stuff also affects how I feel about myself.

For example, with or without an appetite, for me to go to a restaurant and actually order something I can eat is torture to me. Finding an entre that doesn't have wheat, msg, sugar, seeds, hot-spices, etc. makes reading the menu a chore, rather than a pleasure. Getting a waitress to actually cooperate with my limitations and "strange requests" make it all the more challenging.

I was at a local steakhouse with a friend recently,  and discovering that the day's lunch menu had nothing I could eat, I decided to make something up on the spot.

"Can I have this salad without the onions, crutons, and tomatoes please?"
"What?" she asked incredulously, "I mean, you'll just end up with lettuce and cucumbers, sir."
"Great, that's the salad I want please. Just lettuce and cucumbers."

Now on a roll I thought, I continued humbly: "Can I get this halibut poached instead of barbequed?"
 "Oh, no, we don't have that, sir." she said matter of factly.

With my lunch mate looking impatiently at his watch, I started feeling self-conscious, so I decided to move into my Jack Nicholson in "Five Easy Pieces" mode.

"OK," I said, smiling as sincerely as I could, "Do you have doggie bags?"
"Yes, sir. Why?"
"Well, take the halibut from this item, and instead of BBQing it, throw it in a doggie bag. Then take the onion you took off my salad, and throw that in there with 4 ounces of water. Ask the chef to seal the bag, shove it in the oven for 25 minutes, and serve what's in the bag to me on a plate. You now have poached halibut!"

Now I confess, part of me was delighted in my creative ordering solution that day, but another part of me was actually embarrassed to have to be so "special" and "different" at a restaurant in front of my friend. And that's the biggest rub, and biggest lesson I'm taking away from all this body morphology thinking.

What I'm discovering is that what I look like just doesn't matter. Whether I look good or bad, "normal" or sicker than a dog, it doesn't change people's perceptions of me, or more importantly, my perception of me.

Sometimes the problems we face are that we often don't manifest symptomology externally. Many of my fellow patients tell me "we are damned if we do, damned if we don't," referring to the fact that so much of our illness is invisible, that many friends and loved ones will actually say these gut-wrenching words: "Well you don't look sick." On occasion in frustration trying to explain to an ignorant doctor, I've asked, "would you treat me different if my pancreas was hanging out of my torso, or my spleen was running out of my nose?" The fact that I wore a suit to his office and wasn't bleeding sadly affected his diagnosis, adversely. I've learned the hard way that on doctor visit days, I shouldn't shave, bath, or brush my teeth. Helps with the diagnosis, if you know what I mean. I'm serious!

Apart from physician visits, I think it's natural and healthy to want to leave the house dressed nicely, with the best attitude possible despite difficult circumstances. But when I put on a false face, and am worried about "my figure" or the fact that I have a "pot belly" instead of simply getting well, then I've crossed the line.

So I now wake up every day no matter what with a smile, pleasant music, and a bath. I shave whether or not I plan on seeing anyone that day. I put on clothes that feel good to me, rather than flatter my figure. I look in the mirror, see my butt-less frame, my growing pot belly, and say out loud, "baby got no back, but baby got belly!"

Then I say that which is most important to God.
"Thank you Lord, that I'm alive today, that the Ampligen is healing me, as evidenced by this weight gain. I'm one of the bravest guys I know, and this is going to be a great day!"

Then I rush to the Internet and buy more stock.

1 comment:

  1. Hi - I have CFS and was researching Ampligen when I came across your website...

    You are brave and I am very proud of you, as a fellow sufferer, that you have found something to finally help!

    Continued luck with your treatment - I'll keep checking back to see your progress...

    Thank you.


    PS I agree with you whole-heartedly about the lack of knowledge on the part of doctors and medical staff. I sought a diagnosis for six years with 42 doctors (complaining of fatigue, sore throat, cognitive decline, etc. at the age of 31) and not one of them ever as much as ran a blood test - all of them just barely looked at my throat and determined I was just fine! Amazing and depressing.

    Best of luck!