In Transition

[Guest guest]

In Transition by Serena Shaffer (From Quest Extra May/June 2005)

My self-image has always been an issue. Teasing caused feelings of

ugliness and shame. As I grew older I hated to walk in front of

others. I would never tell others how hard it was for me to keep up

with them. I was in a state of denial.

But to thrive in life as my disease progresses, I must consciously

choose to adjust — to leg braces, a cane, a wheelchair. It takes

perseverance. I tend to think of myself as I was in the past, not as

I am now. Sometimes it's emotionally very hard. I let myself cry and

move on.

I've seen a therapist and been blessed with a boyfriend who has

taught me to not be ashamed, and to be myself –- leg braces, cane,

occasional wheelchairs and all. When I read Quest and see what

someone with SMA has to go through it really puts things in

perspective for me.

Serena Shaffer, 33, Burbank, Cal., Charcot-Marie-Tooth disease

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Stubborn and Determined

by Dorris Norris

Dorris Norris

Since my diagnosis in 1996, I see myself as a more determined person.

I'm determined to do everything I can to slow down the progression of

this disease, and to live my life as a normally as possible.

It's taken a strong will and stubborn determination to follow my

doctor's recommendation of aquatic exercise, but I've done it

faithfully almost every day for over seven years. I've often had to

make myself get dressed and go to the local wellness center, but it's

paid off. I'm still walking (with a rollator walker), doing light

housework, and puttering in my hobby greenhouse. I maintain my sense

of self by taking pride in my appearance, keeping a positive

attitude, counting my blessings, and keeping a smile on my face (no

sense of self, both because I'm disabled and because