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Enjoy the Present


When were you diagnosed with MS and what was the first thing you did after you found out?

October 18, 1997. UCLA Medical Center, seeing my third neurologist.  What did I do? First of all I was relieved to finally get a diagnosis. After seeing 2 previous neurologists who wouldn't commit to their findings AND... I got pissed off! Why? Because my future then looked very bleak. I was extremely active! Backpacking, rafting, camping, running 5Ks, and cycling. Now I was going to be confined to my house?

What advice would you give to someone just finding out they have MS?

Don't jump to conclusions, like I did. I though my life was over. But it wasn't. Just take your days one at a time. Be proactive with your health. If you don't understand something your doctor says, question him or her. If you don't like something? Tell him or her. YOU are your only ADVOCATE in this mind-blowing new adventure, Take advantage of all that is offered. Immerse yourself into everything you can that has to do with MS: 1) Seminars 2) Luncheons (almost always free) to hear the latest news from MS drug reps and expert physicians.  3) Chair exercises.  4) New drugs on the market specific to MS.  5) Get an MS Walk Team together and start raising money for a cure. Or join another team.  6) Learn about the Americans with Disabilities Act 7) Check out options on keeping your job. Be open and honest with your employer about your new life. 8) Especially go to a seminar and hear some one discuss INSURANCES. These are complicated areas that most new patients get swallowed up in and don't know where to turn.

What is something good that came out of your MS diagnosis?

I've learned that yes, I have MS. But...MS DOESN'T HAVE ME!!! I am still the same active person I was before MS. But I have to do things in moderation now. And I have to choose my activities. Would I still like to backpack to the top of Mt. McKinley? You bet! But I can't. I have no steam (energy). And I no longer raft. Because of MS, I am weak and if I was to fall out of the raft, I would drown because I couldn't save myself... or anyone else for that matter. So I still camp, fish and day hike with friends.

What is your morning routine?

Depending on whether I have a doctor appointment or some kind of therapy, that makes me arise early, I usually sleep late. Till 10:00 or 11:00. Then I walk my dog around my apartment complex, 1/4 mile. This I do (4) times a day. Then I drink a protein shake, taking my meds (Tecfidera - for MS) along with it. Then I get on the phone and start calling MS friends to check on them.

How has MS affected your daily life?

It affects my cognitive skills. If I don't write things down, I will forget them within 10 minutes. I no longer work outside my home because of again, lack of cognition. Also because of extreme fatigue AND a affects my emotions. Oftentimes I get angry and frustrated over the least little thing. And these are things I certainly don't want the public to see. But I have a lot of friends who come to help me at times, and they see this side of me. And they accept me for who I am.

Can you remember your saddest memory of your life?

B4MS (before MS). I worked as an Emergency Medical Technician and was called out to a job where a teenage gal had gone skydiving. It was her 16th birthday and that's what she wanted to do. So her parents let her. But her chute didn't open. And I, along with my partner had to load what was left of her, into the ambulance for a trip to the hospital's morgue. I wish I could get this memory out of my head. But it lingers in the periphery of my brain.

Can you remember the happiest moment of your life?

When I became a published author. My autobiography, Sing, O Barren Woman, was published by America Star Books in 2007.

What is the greatest achievement you have done since being diagnosed and how were you able to achieve it?

Becoming a professional playwright and having 4 one-act stage plays produced at a theater in my hometown. They were all well received and got accolades in the local paper. Since I now work in my home, I've taken some online courses on playwriting and screenwriting. Again, using notes. Writers write about what they know. Notwithstanding, my writings usually stem from my "very" active life B4MS.

Any other thoughts you would like to share?

People compare my life now to the little toy that came out in the late 60s. "Weebles wobble but they don't fall down." Well... I've wobbled and toppled a time or two. But just like the weebles, you can't keep me down. Life is for the taking. Follow your dreams and you will go far. One-day-at-a-time. Don't look beyond tomorrow... enjoy the present!!

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