I've been on Remicade for just over a year now, and during that time, I've gained about 60 pounds, taking me to being the largest I've ever been in my life. I noticed that it's harder for me to move during exercise classes now, and I get winded just taking a shower. I can't stand for more than an hour and 15 minutes without getting a back spasm, and I am unable to touch my toes while standing or tie my shoes by just bending over anymore.
That said, I am almost 55 years old, and I've had Crohns disease for 15 years, with only one operation on my intestines so far, so that's a win for my body, because most Crohns patients end up with multiple operations and a colostomy bag within the first 5-7 years after diagnosis, depending on the severity of the disease. So many fellow "Crohnies" that I read about on Crohns and Colitis websites are struggling just to stay alive and have a halfway normal life. Some can barely get out of bed, and a majority have trouble holding down a job, because they spend so much time running to the bathroom. So I feel that I am fortunate in that I can still get out of bed in the morning, I can still do some household tasks, and I can still write in my blogs and keep up with my son and husbands needs. I can also complete three exercise classes a week, though I have to modify a lot of moves to low impact.
Despite the love and acceptance of my family and friends, though, I still feel bloated and hideous sometimes, and I struggle to reconcile how I feel with how I look in the mirror.
Science fiction author and sage Ursula LeGuin has some brilliant comments on beauty and aging, which spoke to me in a way they wouldn't have just 15 years ago.
"Perfection is “lean” and “taut” and “hard” – like a boy athlete of
twenty, a girl gymnast of twelve. What kind of body is that for a man of
fifty or a woman of any age? “Perfect”? What’s perfect? A black cat on a
white cushion, a white cat on a black one . . . A soft brown woman in a
flowery dress . . . There are a whole lot of ways to be perfect, and
not one of them is attained through punishment.
Beauty
always has rules. It’s a game. I resent the beauty game when I see it
controlled by people who grab fortunes from it and don’t care who they
hurt. I hate it when I see it making people so self-dissatisfied that
they starve and deform and poison themselves. Most of the time I just
play the game myself in a very small way, buying a new lipstick, feeling
happy about a pretty new silk shirt.
One rule of the game, in
most times and places, is that it’s the young who are beautiful. The
beauty ideal is always a youthful one. This is partly simple realism.
The young are beautiful. The whole lot of ’em. The older I get, the more
clearly I see that and enjoy it.
And yet I look at men and women
my age and older, and their scalps and knuckles and spots and bulges,
though various and interesting, don’t affect what I think of them. Some
of these people I consider to be very beautiful, and others I don’t. For
old people, beauty doesn’t come free with the hormones, the way it does
for the young. It has to do with bones. It has to do with who the
person is. More and more clearly it has to do with what shines through
those gnarly faces and bodies.
Who I am is certainly
part of how I look and vice versa. I want to know where I begin and end,
what size I am, and what suits me... I am not “in” this body, I am this
body. Waist or no waist.
But all the same, there’s something
about me that doesn’t change, hasn’t changed, through all the
remarkable, exciting, alarming, and disappointing transformations my
body has gone through. There is a person there who isn’t only what she
looks like, and to find her and know her I have to look through, look
in, look deep. Not only in space, but in time.
That must be what
the great artists see and paint. That must be why the tired, aged faces
in Rembrandt’s portraits give us such delight: they show us beauty not
skin-deep but life-deep."
Ursula K LeGuin, from her book "The Wave in the Mind, Talks and Essays on the Writer, the Reader and the Imagination."
I realized that I have to work harder now to accept my flawed, fat and aging body for what it is: A miracle that encases my good soul. Here's what Kate Mulgrew has to say about giving up on "vanity"
https://www.youtube.com/watch?v=zaF0--u-q6Y
