Monday, October 15, 2007


I the July/August Issue of Neurology Now there was an article about Richard Cohen. Cohen was diagnosed in 1973 at the age of 25 with Multiple Sclerosis. At the time he had just landed a great job working with ABC news as an associate producer at the time of the Watergate hearings.
MS was not a mysterious disease for him to come to grips with. His mother and father both had Multiple Sclerosis.

“I don't deny that I have the illness, he says. I did for a while, and I think everybody does. But you come face to face with the symptoms soon enough. You'd be really out of touch with reality if you tried to play that game.”
“Still, what I denied then and what I deny now is the inevitability, the certainty of possible outcomes. I know I deteriorate because it's a progressive disease, but I'm not going to make assumptions about wheelchairs and not being able to go up steps and not being able to work-things like that, Cohen says.”

I read the article. I put it aside. Something intrigued me about it and at the same time I was bothered by it. I encourage you to follow the link and read it if you already haven’t.

It’s obvious that this man has had his share of health problems from having Multiple Sclerosis and has overcome many obstacles. He has also survived two bouts of colon cancer.
He also has a very supportive and successful celebrity wife, Meredith Vierra. Cohen too has enjoyed a successful career despite his health challenges.

So, I’m not proud, but honestly I have to say that if ANYTHING could make life with MS easier it would be an abundance of financial resources.

Yes, he continues to write and work and that is noble and impressive. He works because he has a passion about his work, not because he needs his income for survival. Unlike many of us the celebrity profile MS spokespeople don't have to worry about health care, insurance, paying the mortgage and being able to purchase your medications.

(Ok, pissyness aside now…I’m showing my internal dialogue that needs work: Feeling helpless about financial resources.)

He talks about a “healthy” denial…..Denying the inevitability and the certainty of possible outcomes with a progressive disease. I guess that’s as good as any Live In The Moment Philosophy. Can you really ever put that credo to task? Aren’t the inevitability's always peaking around the corners in the nooks and crannies of our lesioned minds?

The article goes on:" In the end, Cohen proves that a healthy sense of denial, no matter what the prognosis, is one way to face adversity. (Sorry, Sigmund).”

So, aren’t we talking about acceptance here? Once through all the other stages of grief we come to a place of acceptance. THEN WHAT???

Kublar Ross wrote those stages of grief for the dying. We aren’t dying! It’s a chronic progressive disease. We get to stick around and deal with the continued punches. So we accepted IT. Every day we work through a new or recurring problem and again we do the stages and work toward Acceptance. It is what it is.

Now What?

Well someone answered my question. He too read the article about Mr. Cohen and wrote a response to the editor. It made sense to me.
Patrick Jones wrote that “for people whose losses are not terminal or even immediately terminal, they often reach the Acceptance stage and then enter depression because they are at a loss at how to proceed.”

See there’s the rub that was bothering me…it was the “now what?”

He added two additional stages of grief :
#6 Integration.
#7 Co-creation

I’ve been giving these two steps a lot of thought lately. Not coincidentally it being my 50th year on the planet.
So after

  • DENIAL (This isn't happening to moi!)

  • ANGER (Why moi)

  • BARGAINING (What If...)

  • DEPRESSION (Whatever...)

  • ACCEPTANCE (OH well...*blush* speech..."For this award I'd like to thank my producers...)

Patrick Jones adds:

  • INTEGRATION (The challenge of meshing your new decreased abilities and capacities with who you are.

  • CO-CREATION (Contribute and follow your passions and create a new path for yourself)

Apologies to Mr. Jones. I paraphrased my own interpretations based on my spiritual or lack of spiritual beliefs. Nevertheless I found much to think about. I'm working on INTEGRATION. I know my disability from MS is not who I am. I learned awhile back that I also am not what I did. I enjoyed and profited from my work as an artist/designer and I used to define myself by it.

Obviously we have to try to move past the fact that this and that keeps happening with our MS and decide what we can do, want to do, and do it. (sometime I feel like I need to do things whle I am able)

So, I can still paint, I just have new limitations...but I can still enjoy the process. Which brings me to CO-CREATION. Following my passions regardless of preconceived notions on what the end result should be. I really don't know what else I would do that has value to me.

If I don't post as often it will be because I am conserving my time and attempting to schedule myself into my life as I now know it. If I don't I surely will fall into stagnation and back to depression.


mdmhvonpa said...

I was diagnosed in 1995 ... I think I am still in the 1st phase.


This was absolutely profound, Bubbie...thank you.

(and you KNOW it must be to leave the likes of me speechless)

Linda D. in Seattle

Bubbie said...

Back from DizzyWorld? Get your fill of all things Mousey?

Bubbie said...

Did you not know that "Profundity" was my middle name? It usually only makes sense to me though! lol

Joan said...

I've read some of his writing and have seen an interview with him. He didn't strike me as a role model for me.

I agree that the financial resources issue is MAJOR. Someone said, "when poverty walks in the door, joy flies out the window." I recently married my roommate of 16 years, and now have his medical insurance. Just knowing that I have that one critical item has enabled joy to return. When I don't have to worry about money (in this case, medical insurance), I can return to looking at the pretty flowers.

Zee said...

So, I’m not proud, but honestly I have to say that if ANYTHING could make life with MS easier it would be an abundance of financial resources. ... Unlike many of us the celebrity profile MS spokespeople don't have to worry about health care, insurance, paying the mortgage and being able to purchase your medications.

There is something inordinately wrong with a society that forces its citizens to choose between putting a roof over their heads and eating or being able to buy medications that will help them continue to be productive members of their society for as long as possible. I read an article just yesterday over on about the fact that many people are having to decide whether to treat their breast cancer or to just let it take their lives and live as well as possible until then - because they're underinsured (or not insured at all) and paying for the treatments would be so ridiculously expensive.

The healthcare situation in this country is so disgraceful it makes me want to weep. (I have a post brewing on just this topic... stay tuned! ;-) )

At any rate, just wanted to chime in and agree w/ your insights. I'm "rejiggering" my life these days in order to pay off all my debts and get as much money into savings as possible before my MS puts me in a place where my ability to work is reduced. I know it will come some day, so I'm doing what I can now to get myself into a better financial position - because GOD KNOWS the government and health insurance companies are going to do as little as possible!!


Diane J Standiford said...

You probably know he wrote a book too-"Blindsided." I read it when I need a lift. Saw a documentary on him too, his Dad is doing great.
Agreed--money, sure makes living with MS easier. I love your name.

harkoo said...

I am glad you are doing your art--can you show us your work sometime?

Have myelin? said...

The financial resources is major, indeed. We *would* be comfortable if not for Texas excessive child support guidelines that were revamped this year.

So in 5.3 years we should have the resources I need to adequately take care of my medications and modifications to the house.

Yes, Money makes living with MS far more easier.

Wonderful post.

Bubbie said...

Joan: I have good insurance too, and we pay dearly for it, but you still can go under from the copays, while living on disability. Without another breadwinner I'd be in a bad way. I feel for those out there that are single.It can't be easy or stressless.

Bubbie said...

Zee: anxiously awaiting your blog rant on the subject. being close to an election I hope everyone takes this topic to the polls. Sounnds like you have a plan to do the best with what you have now for your future possible outcomes.
Sounds like proactive integration to me. good going.

Bubbie said...

Diane: I haven't seen the book. You liked it obviously....I'll check it out.

Bubbie said...

I'll show you mine if you show me your. LOL. Just kidding...where's YOUR blog ??? I'll surprise you all with a blog of artistic creations here soon.

Peej said...

I read his book about 5 years ago and while it was interesting, it had nothing in common with MY illness. You're right, they have money... that changes everything.

You're an incredible writer. I enjoyed the article and have subscribed to the blog. Keep up the good work. :)