Living with MS, I feel suppressed, even neutralized, but never destroyed
I compare the effects of battlefield fire to living with MS
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I said I would try not to overwhelm you with tales from my past in the military. For the most part, I’ve been true to my word, but something crossed my mind recently that made me think immediately of multiple sclerosis (MS), and I couldn’t resist sharing it.
As with all of my columns that contain military references, I beg your indulgence.
At some point in my career, I learned the terms for making an assessment of either an adversary’s effectiveness and capabilities, or that of my own. When making such an assessment, the words “suppressed,” “neutralized,” and “destroyed” are used, each one having a specific meaning. As I briefly cover them, I’m certain that the ease of comparing them to MS will be apparent and that you’ll probably think of plenty of examples I didn’t.
In the military, “suppress” means to degrade a force’s capability, or, simply put, to make a unit change what it is doing. It’s considered temporary, effective only while the suppression is taking place, and reduces the force’s capability by about 3%.
This called to mind what goes on during a relapse in a person with relapsing-remitting MS. I think it’s more than fair to say that a relapse of MS symptoms degrades and reduces someone’s capabilities and is mainly effective while the attack is going on. Those diagnosed with that form of MS are the real experts and can enlighten me, because I don’t actually know.
My battlefield assessment
I have primary progressive MS, and I can assure you that at the beginning, I definitely felt suppressed. I suppose you could say that I progressed past that, but some days are still worse than others and can make my effectiveness feel very reduced. Then, as now, MS made me completely change what I was doing, and that was particularly difficult to deal with.
“Neutralized” is more severe than suppressed, but it is still considered temporary. A neutralized unit is disrupted, or incapacitated, and is unable to meaningfully continue in its mission. Even though it’s temporary, neutralizing is still effective even if the action is no longer taking place, and it represents a reduction in capability of about 10%.
Although it’s not temporary in my case, I feel as if MS has disrupted my life and kept me from meaningfully continuing my original mission. I’m not completely incapacitated, but some days it really feels like that, and while I can participate in my own life, it’s not the way I originally meant to. I should be grateful to still be able to play a role in life, and I am, but I have found that the bitterness never completely goes away.
“Destroyed” may imply a state that is complete, but it actually only means a reduction of about 30%. If a unit’s capability is destroyed, it is considered to be ineffective and permanently incapacitated until reconstituted. Unlike the other two, this one’s effects are considered to be permanent.
While MS may have reduced my capacity by 30% or more, I honestly don’t feel destroyed. I think that is primarily because my friends and family have never made me feel ineffective. There’s no denying that I am permanently incapacitated and have suffered a severe reduction in capability, but they are a big part of what makes me able to engage with the world around me.
I don’t know what the future holds, but there’s always the chance that I will never be able to reconstitute. That thought would be devastating without my support group. I don’t like saying, “I have MS, but it doesn’t have me,” because it certainly does. I do like saying that, while it might suppress or neutralize me from time to time, it will never destroy me.
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Ian R
“I said I would try not to overwhelm you with tales from my past in the military. For the most part, I’ve been true to my word.”
This brought a smile to my face. In the UK there was a classic comedy called Only Fools and Horses. One character was Uncle Albert who had served in WW2 in the Royal Navy. He moved in with his nephew. His character often began with “when I was in the war…”. The military was a big part of your life and you (despite your best efforts) can’t help yourself and bring in something from your military experience. You’re the Uncle Albert of MS news today.
I do like saying that, while it might suppress or neutralize me from time to time, it will never destroy me. Unfortunately this is exactly what MS does - the gradual destruction of our central nervous system which eventually leads to our demise. I think it’s important to be honest about this as many new MSers delay starting a therapy or never therapy as they are worried about the side effects of the therapy. What’s often not mentioned is the risk associated with untreated MS - often substantial disability and a shorter than average life expectancy (by 7-10 years).
Benjamin Hofmeister
There is little doubt that it is going to destroy my body. What little it hasn't already I mean.
I should have clarified that the me I meant was my essence, maybe even charm that makes me... me.
I'm going to try to find Only Fools and Horses on one of my streaming services. I need to see who Uncle Albert was before I decide to be flattered or offended at the comparison. 😀
As part of my medical retirement process from the military, I had to visit Mental Health and one of the things they wanted to know was did I ever have dreams about being in the army. When I said of course, they wanted to know about anything traumatic and did I think it was because of PTSD? I told them no, it was because I had done that job for 22 years and it was very likely to show up in a dream occasionally.
Lisa Bowser
Thank you for your article. I am having a really bad day today, so destroyed for the moment seems to work right now. We are having extremely cold temperatures where I live, and it's really affecting my balance and my MS hug symptoms. No day is perfect anymore, but today is one of those days where I maybe just think about sitting and crying , if even for a moment. But right now I'm at work as I type this, and I don't even really have the energy to cry so I'm simply sitting out the rest of my work day. Stay blessed and continue to be a blessing through your articles!
Benjamin Hofmeister
Who would have ever thought that crying would use up some of our spoons? I've literally had to look at people and say thanks for the advice that I should just let it out, but I'm too tired to let it out.
Cyndi M. Benedict
Thank you. I too dislike the “I have MS but it doesn’t have me.“ Because, as you stated, it does and some days are better and worse than others. I am not destroyed or totally defeated yet, but articles like yours help in braising above if even temporarily. Again, thank you.
Benjamin Hofmeister
Thanks for that Cyndi.