The Priest and the Playwright with MS

Two stories came to my attention today. One was about a Canadian playwright and actress who is headed off for the "Liberation Treatment," CCSVI, which uses venoplast (balloons in veins) to correct constricted neck veins that some are speculating may be the cause of MS.

It sounds like she was diagnosed at the age of 33, and that is about the most common average age at time of multiple sclerosis diagnosis. She says she has had MS for 12 years and has had to use a cane, even a scooter at times. She is distraught and, "If hope the operation at least stops the progression. If I'm like this for the rest of my life, I think I can handle it."

Twelve years after DX and she only needs a cane, and scooter occasionally. That is good and the most common progression of MS. She may indeed, with no intervention, stay the same. Flip of the coin, she may not be able to get by with just a cane. Multiple sclerosis is a CHRONIC PROGRESSIVE DISEASE WITH NO CURE.

The early-year's remissions are not cures. The Internet is full of stories about the new CCVIS CURE. Sigh. I heard this all before, in 1990, front page of NY Times. That "cure" along with all that followed , with time allowed for the natural progression of the disease, was no cure at all. Eventually, I predict CCVIS will be touted as a "option for some" and "a starting point" only to fade away into the annals of medical history as another attempt to cure MS. (How do we know it doesn't cure Alzheimer's?)

One day a cure WILL come, but we are not there yet. I see little in the way of advancement in the knowledge of what causes MS or how to stop the symptoms. Even symptom management has shown little change since I was DX in 1990. I keep waiting.

So, another person is off seeking an end to her MS progression, a life in a wheel chair too hideous to imagine. (Do you know how insulting that is to people who make happy, productive lives in wheel chairs every day? How insulting and foolish to those with progressive MS, you know, those FEW who go straight from first doctor to a wheelchair and are bedridden in a few weeks, blind and die shortly after? THAT is the scary MS. THAT is rare. But 12 YEARS after DX, you have had plenty of time to accept and embrace whatever future lies ahead.

Then there is the priest. He was diagnosed in 1991 and now uses a power chair. (Common progression.) When he first needed to use a cane two years after his diagnosis, he thought, "OK, God, I can handle this, but no more." Even a "man of God," so afraid of that dreaded wheel chair. Good thing he didn't break his spine or have any other condition that requires a wheel chair.

In poor countries people are desperate for wheel chairs, crawling on their elbows through the dirt roads. Here, in America, and elsewhere, we can order a chair off the computer! Such independence we have, yet we act like it is worse than death! I had a friend tell me he would rather die than be me with MS. Wow. I don't see these people aging gracefully as our bodies betray our youthful desires.

Now, my attitude, stated above, has been criticized by others with MS as my, "wanting too keep my label of MS," seriously? I guess if I had stage 4 cancer and embraced my fate instead of flying to other countries for "miracle cures" like Farrah Fawcett did, that too would mean I liked my label of cancer? The logic is missing. What I LIKE is living life to the fullest, the best I can with what my body allows me. I know there are minds out there working to find a cure for MS, to find a way to fix the damage that has been done to my body. I also know the person who finds all that may not be born yet.

I read the MS blogs and some of you are so miserable. I am happy! I live a happy life. I choose to live in happiness. Label me "Happy in spite of MS" if you need to label me.

The priest decided to use his MS progression to help others in similar and worse situations than himself. (Why it takes religious people so long to come to these simple conclusions always baffles me. Doesn't the Bible refer to such struggles again and again?) He discovered that he COULD handle his MS symptoms.

Nothing wrong with being on the front line against MS. I look for a cure every day. I talk to my doctors every year. But, I refuse to become angry, bitter, or afraid of what MS might do to me, in the meantime. I have multiple sclerosis, a CHRONIC PROGRESSIVE DISABLING DISEASE WITH NO CURE. If accepting that fact is wrong, then I don't want to be right.