Stacey’s Story

We’re fighting MS and the battle we go through everyday. Getting healthcare, getting services, figuring out how to function in the world when you have a disease that changes every day. Today you’re fine and tomorrow you’re not. And the next day who knows?  Right now I can walk maybe a block, and that’s it.

It’s been a roller coaster ride. I was blind for a while. I could see that there were three people in front of me, but I couldn’t tell who the three people were. I felt like I was in a cloud, but I could still function out in the world, going to work.

Then I had vertigo for two weeks and could barely get out of bed. I lost my job.

When they assessed me at Kaiser, between the walking, the bladder issues, the bowel issues, and at times cognitive impairment, they told me,“It’s great you have a UC Berkeley degree, but it looks like you might not be able to work at more than McDonald’s.”

Our group [The MS Fight Club] is about reality. What would you do if you were not able to walk tomorrow?

Do you have enough money saved up in case you get sick? How are you going to survive for 6 months until you get disability? Who can you call on to help you?

That’s how I’ve always lived my life. I don’t consider myself sad. It’s more like, this is just what life is.

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Diagnosis: Secondary Progressive

Stacey’s first MS episode occurred 20 years ago while she was in college. She took medications for 12 years and while their side effects made her sick, she was still able to work two jobs—one 9 to 5 during the week and a second job on the weekend.

When the disease advanced to the progressive stage, Stacey began experiencing cognitive blocks and vertigo.

Stacey tried different support groups but none felt right. During a Kaiser appointment, a mental health worker suggested she find a community and connected her with another woman looking for a group.

“We began talking on twitter and she knew another woman at her job. I met another young woman who was having a rough time at her support group.”

Four people attended the first meeting. Now with Stacy leading the group as the Lead Coordinator, MS Fight Club, East Bay, has about 40 people attending monthly meetings. This group is open to people with all levels of MS, from the those who are barely affected to those who can barely function. It’s a place where they can socialize or deal with whatever problems they are confronting, no matter how dire or desperate their situation.