Wednesday, February 18, 2009

Why do we need to walk?

"All the forces in the world are not so powerful as an idea whose time has come." Victor Hugo, History of a Crime

I'm still feeling frustrated that my plan to walk/march for mental health research is something that would be beyond what I can presently do. I so wish someone would take this on because I think it would have a huge stigma busting impact.

Why am I so passionate about this right now?

I am showing some mild symptoms of tardive dyskinesia and am worried about it. The meds I've been taking have been great, but are amongst those that can cause this awful side effect. And I've been thinking of what the alternatives would be. Olanzapine was always good for me, but causes weight gain and has been the direct cause of diabetes for many. Much more research needs to happen to find more acceptable drugs.

I've for many many years been frustrated about the puny amount of money going into mental health research - puny when you compare it to cancer and heart research. The direct reason for this is the stigma. When no one is willing to talk about it, nothing gets done.

A walking relay across Canada - and for our American neighbours, a walk across the US - would draw attention to it. It would draw attention to the need for research dollars; and it would draw attention to the needs of those who live with mental illness. I'm sure if someone took the initiative to work on this, he or she would get lots of support from the Mental Health Commission of Canada.

Pastor Don spoke on Sunday about "The Power of a Shared Vision." He said, "Vision is the ability to see what should be and to imagine what could be."

I have a vision of great groups of people - people who live with mental illness and those who support them - marching across Canada in relay fashion. Starting in Vancouver and moving east, passing a talking stick from one to the other, speaking out about their needs. By the time we reach the east coast, I believe the public will have learned a lot and funds for research would have been raised. Each group will encourage the next. We will be encouraged to come out from the shadows.

I have a vision that one day mental illness will be talked about more and there won't be so much stigma. Those who suffer from the illness won't need to also suffer from shame. More of us will go for help. More help will become available.

Can you see it? Can you - will you - share in my vision?

Pastor Don quoted Peter Senge from The Art and Practice of the Learning Organization: "A shared vision is not an idea, but rather a force in people's hearts that is unrivalled in its power to transform and accomplish."


Jena (Violet) said...

Dear Marja,

I'm a bit concerned that you are thinking so heavily about this when you heard a vivid "resounding no". It also seems a bit like you are personalizing the need to do the march. Maybe raising more awareness does need to happen, but for the right reasons- and in diverse ways similar to what you're thinking. You have already done so much. More will happen, in time. I also truly think that you will solidly know when you are called to something. Everything will fall into place.

TD is a result of long term use of the older ("typical") antipsychotics, even when they are used for Bipolar. These days, awareness is given about that, and those medications are not given as a first line treatment or indicated for long term use. There are many new ("atypical") antipsychotics that can treat symptoms of schizophrenia and bipolar. These are used first and usually with success. And side effects are minimal. I'm sorry you are developing TD. Talk to your Dr. about changing your med- I don't think it's too late. But just because of that, doesn't seem like a reason to go against what you believed so strongly in your last post.

Love, Jena

marja said...

Thanks, Jena. Yes I heard a "no." But it was a no that "I" should not be organizing this. I would still love to see this happen and participate in a walk like this. In fact, I just can't now see this not happening. A walk like this would do so much good. I can't think of any better way to raise awareness.

But I need to think of Living Room first. I've got to protect its welfare and, for now, Living Room is hinging on me, though I'm having some others join me in guiding it now. There are now nine groups and more in the process of forming. I can't let that movement die.

I'm on an older antipsychotic and I guess that is what worries me, though it has worked so well for me. I talked to my pdoc tonight and he assures me that my problem is not TD. Just a lot of tremors.

I know my passion in these two posts is the result of hypomania and I'm going to have to try and slow down. But sometimes hypomanic inspiration has done a lot of good, don't you think?

Jena (Violet) said...

I do think that hypomania can be a positive force of inspiration, yes. I have infact experienced it in absolute abundance!! But, we have to be careful, because hypomania in its goodness walks a very thin line.

I have had moments in hypomania where i've been the most accomplished I've ever been.

I've had moments where my mind began playing tricks on me, and where my judgment declined.

I've had moments where I thought I was ok and even excellent when later I looked back and felt a little embarrassed.

Hypomania is a funny thing. It is inspiring, productive, even healthy- but for people like us who fluctuate, it's something we really have to monitor for ourselves.

I'm so glad that you don't have TD and that you're just having tremors- I know tremors are so annoying and even distressing, because I'm taking medication to treat them for myself too. It does affect life.

It's good to see that your passion with Living room is still so rich. I hope that continues. I have watched it grow, along with you, and I am so excited about that.

Have a great day! It's sunny, make sure you can soak up some of those rays :)

marja said...

Your comments are comforting and encouraging, Jena.

Yes, I will have to see if this vision stays alive, even when I'm more stable. I shouldn't rush into a big thing like this. I need to talk to others and test the viability.

Today I feel like the hypomania has lifted. In fact last night and this morning I felt downright down. But have now evened out.

I will work on S's pictures today.

Thank you for your understanding and your friendship.

Love, marja

Jena (Violet) said...

It sounds like you have a relaxing day ahead. I hope you enjoy it. Marja, you are such a giving, loving soul. I appreciate all your ideas and insights and talents. There is a lot to be learned from you. Go easy on yourself. You deserve to enjoy life to the fullest. Love ya. Jena xo