I was in my twenties, fully engaged in a business career, when I was diagnosed with relapse-remitting MS. I finally
retired in my 30s due to overwhelming fatigue. Other than intermittent relapses, though, I remained neurologically stable until my 50s when my MS became more aggressive and affected my ability to walk well. I currently use a cane or rollator, as needed. In the past, I have used Avonex and Tysabri, but now focus entirely on diet, nutritional supplements, exercise, and mental health to manage my MS.
Two years ago, I started blogging about my MS experience on Peace Be with You on the MS Journey. To my surprise—I had rarely written poetry before—I quickly segued into posting daily three-verse haiku poems. I chose this format because it allowed me to distill the Multiple Sclerosis experience into very few words.
There are now close 600 daily poems published. By far, the poem most commented on and most linked to on other blogs is the poem Pet Peeve. In my response to all the comments, I wrote what I have come to term as my MS Manifesto. The poem and then my response to the spirited comments follows:
Here is a pet peeve.
When people say they are glad
that they got MS.
They are pleased because
it made them better persons.
My blood just curdles.
Are you kidding me?
Was there no better method
to accomplish growth?
Judging by the number of comments, this poem obviously resonated, and I can understand why. I also want to share what triggered my writing it. I had watched a recently diagnosed person stand up in front of an audience and say, “I am glad I got MS. I am a much better person as a result.”
He is not the only MSer I have heard say that. What I have discovered is that those who say such a thing tend to fall into two camps. They are either recently diagnosed and/or they are not suffering from loss of mobility or some other dastardly manifestation of this scourge of a disease.
My position on this? As I said in one of my poems,
I can be grateful
for gifts this challenge gave me
and still hate MS.
I have no doubt that I am a more compassionate, generous, less shallow person now than I was before coming down with MS. Would I still have reached this more enlightened place as a result of normal maturation? I don’t know and can’t ever know. I only have the life I have. But I will NEVER say that I am glad I have MS. On the contrary, as I said in one of my other poems,
That will be my intention
until my last breath.
Whatever accommodation I achieve with this disease will always be one in which I am, only out of necessity, cohabiting with an enemy. If calling it an enemy is too strong, then I can at least say that MS will never be my friend. I am sure psychologists would have a field day with my position. With my own therapist, we’ve declared a truce in which I say I acknowledge, instead of accept, that I have MS. I will never accept, though, that this is what my life should be like. As I said in another of my poems,
I will not allow
MS to appear normal.
And I am glad I still have some fight left in me so I can feel this way. There are enough days when I feel quite defeated by this disease. Then another day comes when a glimmer of light helps me remember the Judy I want to be and not just the MS-Judy, and I go on to fight again. That’s when I can say,
I don’t want to hear
the odds are impossible.
I aim to beat them.
And, knowing that days will come when I will again feel oppressed by the enormous challenge I face, I keep these poems on display so that I can remember who I want to be at my best.
As for finding the peace that is the title of this blog, I can only say that, variable though it might be, I find peace in knowing that I can control my attitude about my life.
Thanks for letting me share my thoughts with you. You make this journey so much easier because of it.
To read all the comments, go to: Peace Be With You Blog.