Before Diagnosis

Long ago

before I was diagnosed, I knew

there was something wrong.

I thought it was me, clumsy.

I fell up stairways, never down.

Sometimes a knee or an ankle suddenly weakened.

Or a thumb.

The feeling on my upper thighs changed,

as if wood replaced muscle and skin.

Hiking, against the blue of sky,

I saw a flock of birds that weren’t there.

In a school room, a gauze curtain descended within my eyes

as cotton wool filled my ears, adjacent freeway noise

suddenly distant.

My feet felt odd, creaky inside,

and I began to stumble

and fall, and be just a little fearful.

I tried to speak, to explain

but no one listened or wanted to hear.

I thought it was me, annoying, pestering.

I felt judged: complainer (suck it up),

attention seeker (hypochondriac),

moody (menopausal).

I couldn’t keep up with my family on walks;

I thought they were running away from me.

Things slipped from my grasp, a spoon,

the morning paper.

I forgot how to swallow

or began to choke while eating.

Finally the news was delivered:

this is MS.

And I felt relief to know

after 30 years of accumulated oddities

that I was not imagining,

not complaining,

not attention seeking.

I am still the same,

unchanged,

but it is good to know.

17 Replies

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  • Goatgal, you' ve done it again. Such meaning, are you sure you are not an accomplished writer. 30 years, like you say at least you have got a name. What you have written hits home. Keep it up if it helps, I sure appreciate reading what you write, blessings Jimeka

  • jimeka You are such a dear!Thank you for responding. It is windy here this morning at the mouth of Big Tujunga Canyon; though our SantaAnas are usually not bitter winds, they somehow trigger my trigeminal nerve to begin vibrating. It is not painful, but I am aware that it lies waiting to strike, like a coiled snake on the left side of my face. Because of the winds, I stayed inside, watching the trees bend and listening to the moan under the eaves, and in the still air, inside when I would rather be out, I began to remember. And write. So many of us in this forum have struggled to find an answer to the bodily symptoms. Hidden from view, like the memory of pain carried by my face, is the harm that MS does to the spirit. I have found it rare for the emotional side of MS to be addressed by the medical community. I am grateful for our ability here to reach out and support one another: MS is profoundly isolating. Again, thank you for reaching across oceans and continents to speak to me.

  • goatgal, I am at a loss for words. Sadly, I find myself like that too often these days. But what a blessing it is to see how you have been gifted to speak in a language my heart misses, but still longs to sing. Thank you for sharing your gift. Beauty and talent come in so many forms. How thankful I am to all of you who share them here. I appreciate them all.

    Such beautiful words and emotion...As jimeka said, please keep it up @goatgal.

  • Hi Goatgal, it's 2 am here and all is quiet. I have managed to have 6 hours sleep which is very unusual for me, so I thought I would catch up with the forum. I find this is a good place to be at this time of day as you guys are generally awake. We have had really strong winds. We have this ash tree in the back garden, they reckon it is around 140 years old. We have new neighbours and the previous owners built a glass conservatory right underneath it and they have just installed solar panels underneath it. We have had really strong winds and been a tree of such age it looses the occasional branch, well they would like us to decapitate it. No way am I going to destroy a tree of such age, who in their right minds puts glass under a tree? I love what God has created, I also do not want to fall out with the new neighbors but I cannot fold in this case. I think they are hoping it will get the ash disease and then it will have to be brought down, but until then, sorry I have vented. I have just googled where about your canyon is, it looks beautiful, you sure are blessed to live with such beauty close by. Take care my US friend, write on, blessings Jimeka 🌈 🌳🏞

  • jimeka Are you psychic? Just today, I began to work out a poem about the ash tree in my postage-stamp front yard. These are my notes: "Yggdrasil, the world tree that connects the different worlds of the gods, is an evergreen ash. Its roots are directed towards the dwelling of the Norns, the deities who judge the fate of mortals. The honey oozing from that magical tree provides wisdom to those who can taste it. In fact, the ash tree exudes a sugary substance which was believed to be used for making mead by Nordic people.

    Druids and Native Americans prayed this tree to invoke rain in times of drought – ash trees can withstand well the cold and the moisture thanks to its ability to absorb water!"

    I write poetry, just for me, mostly, although I do share with people I care about. Like you, I often wake and cannot return to sleep. I looked up insomnia+MS on the internet and came to my usual, "okay, this is just another manifestation"...plus age...plus going to bed a bit too early because the TV often bores me and at the end of the day I don't really retain much of what I read. Since every day is new, I look forward to mornings.

    Back to the ash tree. The one in my yard is male. Mid January, it has finally begun to lose its leaves although my neighbor's ash lost leaves before the holidays. I noticed, because she went away for Christmas and the bees were so noisy overhead that I looked up when I went to take care of her cats and hens. If you would like to read some of my poems (not about MS but about what I see), write to my email address: oldwomanfarm@gmail.com. I would be glad to share. I send you love and untroubled dreams, Linda

  • Goatgal, have you tried putting ice on the trigeminal nerve? Mine starts to pulsate, and gets inflamed and red when I get a migraine, and ice does help. It might help you too! Sukie427

  • Sukie427 Thank you for the suggestion. You are most kind!

  • Tutu No, you are not at a loss for words. Anyone who can write a line like "language my heart misses, but still longs to sing" has a gifted way with self-expression. I do not speak well in face to face conversations. My ideas are often formed slowly; when asked to repeat what I have said, I am unable. Sometimes I cannot find a word I want, or find the wrong one simply because it begins with the same sound. Writing allows me to express my ideas at my own pace, with time to reread and revise as I want and need. Because of your name, Tutu, I think of you as a ballerina, dancing across these pages, grace and beauty in your trail. Thank you for your reply.

  • No pink tutu for me, goatgal. 😉That's what my grandkids call me. (It's Hawaiian for grandma.)

    You are a poet and a gifted one at that.

  • Mahalo.

  • Wow! You just described my journey to a"T". Thank you for puting it into words for me

  • Thank you for reading.

  • My heart ❤️ breaks for you to survive all that time with no answers. You gave an excellent description. Now you have a name, a voice and a new family of friends here. Thank you for your post.

  • Hi @goatgal!

    You have a real gift with words! I agree with you about MS being profoundly isolating. It's something I struggle with.

    At the time I was diagnosed, 17 years ago, I already had so many brain lesions that my neuro felt I had been experiencing MS for years without knowing it. It made sense because I had long been the family klutz known for crazy mishaps to the point that my Dad knicknamed me "Grace". I'm a stoic person to my own detriment so it had never occurred to me that the mishaps and unrelenting fatigue might be something abnormal.

    I grew up in Southern California and remember the Santa Ana winds very well. Especially how they sent the tumbleweeds scurrying across the playground at my school.

  • goatgal you say you write poetry for you, but it's a gift to me and others too. Pleas continue sharing!

  • You hit the nail on the head! Loved it!

  • Way to go, Goatgal. This about says it all! An arrow straight to the heart!

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