“A poem is the very image of life expressed in its eternal truth.”
Percy Bysshe Shelley

Wednesday, May 20, 2015

When It Comes Early

Whenever it comes,
MS is always costly.
In youth it's tragic.

Deprived of choices,
family and employment
take a heavy hit.

Youth should be allowed
full testing of potential,
not blocked by limits.


Karen said...

It came early for me, but no one told me! I didn't get the MS diagnosis until I was in my early 50's. Upon looking back at my medical history, my neurologist told me that the MRI I had back in the 80's showed multiple brain and spine lesions. For some unknown reason, it was overlooked.
I agree, whenever it comes, or is discovered MS is tragic.

Muffie said...

I have to disagree a bit. I think that younger people are more accepting of loss when MS strikes. Their youthful enthusiasm has a way of overcoming. When the dx comes later in life, it's more difficult as loss follows loss. Just my humble opinion.

Robert Parker said...

Much more eloquent than simply going to ... well, "sucks."

I've seen people limited by "grownups," people who thought they knew what they were doing and didn't, all sorts of people who enjoyed imposing limitation. Just look at the current political "discussions."

Purposless limitation sucks.

Does MS limitation *have* a purpose?Now, THAT'S a question...

Judy at Peace Be With You said...

Karen, Muff, and Robert, your comments triggered in me a reexamination of the impact of MS in youth versus older age. I find, after my reappraisal, that I still hold to my poem's position, which is that, while MS is costly regardless of age, it becomes particularly tragic when it happens in youth.

This poem's inspiration was partly influenced by my personal experience with MS. We now know that MS has likely spanned almost my entire adult life, from my very early 20s and, currently, as I age into senior status. Because my MS manifested so differently in youth versus maturity, though, it felt as if I was newly diagnosed with MS at two separate ages.

An important inspiration has also been my current interactions with MSers, both young and old. Hearing their life stories and concerns has informed my understanding of the impact of an MS diagnosis at different stages of life.

My first MS stage was an "MS-lite" version, lasting 30 years. Though I had short-lived episodes involving coordination, they always seemed to resolve fully. Severe chronic fatigue is what eventually disabled me and caused early retirement.

Chronic fatigue, however, is also experienced with other diseases. Though MS was a possibility, I don't recall an MRI confirming that diagnosis. Also, except for fatigue and ordinary ailments, I appeared otherwise healthy.

However, MS was the leading candidate. Effectively, then, emotionally and practically, I was impacted as if the diagnosis were certain. The condition could unpredictably worsen, maybe even to its more severely progressive variant. In any event, whether from MS or from something else, I was already disabled due to my chronic fatigue. Already affected negatively were relationships, family choices, and employment. My concerns were typical of a young person with MS. Those concerns included:

•Will I find a mate willing to partner with someone who is disabled?
•If I do have a partner, will he remain as I deteriorate?
•Could pregnancy and childbirth worsen my condition?
•If my condition worsens, 1)Will I be able to provide adequate physical, emotional, and financial support for my family; children, in particular? and 2)Will I be able to devote the intensive effort and dedication necessary for career success?
•What other opportunity costs am I experiencing as a result of my current limitations and future outlook?
•How is my self esteem affected?

Young people today, of course, have the advantages of DMDs. However, DMDs are not cures. Young MSers today also confront issues such as:

•As a woman of childbearing age, how do I manage safely my DMDs?
•Given that I have not yet created significant financial resources, how do I manage successfully the expensive costs of treatment?

My second MS stage then began "suddenly" in my mid 50s. From previously being fully ambulatory, I became dependent on various walking aides. Other new symptoms included urinary/bowel urgency and incontinence, brain fog, pain and spasticity, impaired equilibrium.. Etc., etc. This was so radically different from my earlier experience that it felt like I was receiving an MS diagnosis for the first time.

Having therefore experienced a "new" MS diagnosis in youth and then in maturity, I can address its differing impact as a function of age. Receiving the diagnosis is never easy. Youth has the advantage of greater physical and emotional reserves contributing to resilience. Older MSers have the disadvantage of progressive MS losses being added to normal aging losses.

Still, for me, the essential difference between a younger person and an older one receiving an MS diagnosis comes down to the following. A newly diagnosed older person will likely already have created a family, children, and career. The youthful MSer may be deprived of that opportunity. There is a window of opportunity in life to create these experiences, and that window resides squarely in youth. In effect, with MS, youth fast forwards to old age. And, that I find unbearably tragic.

xaidw B said...

Youth should be a time of unfettered freedom with no thoughts of tragedy. Of course, it is not. To add the burden of a degenerative disease, however, is beyond unfair. I know, life is not fair!
So, when I read of the young people who have MS and say it will not slow them down, or change their lives, I cynically whisper, "Just wait".

Judy at Peace Be With You said...

Hilda, yep, I'm kind of a poster child for confirming your "Just wait." Earlier, I actually thought I had it licked. Then it kicked me in the ass in my 50s. The one thing that characterizes MS is uncertainty. It's part of its cruelty. You never have a permanent state to come to terms with. It's a constant replay of the stages of grief; with acceptance, the final one, fairly elusive.