When the Bomb Goes Off

Jamie Hughes avatar

by Jamie Hughes |

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It’s easy to be lulled into a false sense of security, to think you’re the supreme authority in your life. And when that ersatz truth is ripped away, as it was for my husband and me the last week, it can be hard to regain your footing.

I’ll spare you the grimy details, but I will say that it feels like someone detonated a bomb in our home. The doors have blown off and all the windows have been shattered. Our character has been called into question and every aspect of our lives thoroughly examined by state employees. Everything that has been done to us has been done without our say-so, and we are at the mercy of people who don’t know or care about us.

It’s been pretty wretched, to say the least.

But I’ve been in a situation like this before. Around the time of my diagnosis, multiple sclerosis didn’t care about me, either. It took what it wanted when it wanted it, and there was no treatment I could buy, no bribe I could make, to get it to go away. All I could do was endure the spinal tap, the MRIs, and the tests, and lie in my hospital bed and wait. And when the diagnosis came, when the bomb went off inside me, there was no other option but to accept what had happened.

And you know what? I’m still here.

Despite illness, a job loss, a bankruptcy, and the current challenge my family endures, I am alive and well. Frustrated? Certainly. Scared? More than I care to admit. But I’m on “the right side of the dirt,” as my great-uncle Darrell used to say — which means I haven’t lost yet.

In “Through the Looking-Glass and What Alice Found There,” by Lewis Carroll, Alice gets roped into a race with the Red Queen, and like most things in Wonderland, it is a very topsy-turvy affair. No matter how fast Alice runs, she never makes any progress. Finally, the poor girl begs the queen to stop, and they have a very strange conversation:

“Alice looked round her in great surprise. ‘Why, I do believe we’ve been under this tree the whole time! Everything’s just as it was!’

“’Of course it is,” said the Queen, ‘what would you have it?’

“’Well, in our country,’ said Alice, still panting a little, ‘you’d generally get to somewhere else—if you run very fast for a long time, as we’ve been doing.’

“’A slow sort of country!’ said the Queen. ‘Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!’

That’s what life with MS can feel like sometimes — running as fast as you can only to find out you’re standing still. So much effort and frustration for little to no progress. I’ve been exacerbation-free for several years, and I’d forgotten that fact. However, this last week has inspired that same feeling in me. It has reminded me what it’s like to feel powerless in the face of a cruel adversary.

Dear reader, I hope you never have to face a challenge like the one I’m currently up against. But I will say that MS — painful as it is — prepares you for a great many things. You can do it. If you’re having a hard time, believe me, I understand. Don’t give up. You’re still here, and there’s so much to stick around for.

***

Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

Kim avatar

Kim

It's 11:15 pm. I'm sitting here in pain from ms back spasms,RLS, hand and feet diabetic neuropathy, and hip bursitis. I'm only 45 but feel and walk like I'm 85. I wonder when all of this is going to be over, knowing good and well it won't be till my body gives up completely. I can relate to this article and I really needed to hear it tonight. So thank you to the writer and I pray things get better for you. Thank you Lord for helping me through this.

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Jamie Hughes avatar

Jamie Hughes

Bless you, Kim. The worst is behind us now (thankfully), and we learned a great deal from the experience that we can take into the next battle, whenever it arises. Keep on trucking, sister. I'm with ya!

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Juanita Jackson avatar

Juanita Jackson

I’m only 46 but feel and walk like I’m 85. I wonder when all of this is going to be over. It has truly been a rollercoaster for the last two years since I was diagnose. Please continue to pray for me as I continue to pray for all living with this ugly disease. Thank you all for sharing your story.

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Jamie Hughes avatar

Jamie Hughes

Juanita, know you're not alone. We're all dealing with MS in our own ways. The first few years are hard because doctors are still trying to figure things out and get you on the right medication. A lot of changes are happening, both within you and outside of you. Give yourself grace. Rest whenever you need to. Find ways to stay positive as best you can. Focus on what's good while also being honest about challenges. One day at a time is all any of us can manage, so start there.

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Dave avatar

Dave

Hey there, check out Dr. Terry Wahls who cured herself of M.S. and wrote a book about it called The Wahls Protocol.
Also check out Dr.Joe Dispenza , You are the Placebo.
The Living Matrix on YouTube.
Dr. Bruce Lipton .....epigenetics.
We are more than we know!

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Theresa avatar

Theresa

Thank you Jamie and Dave. I googled Terry Wahls and watched the short video of Living Proof by filmmaker, Matt Embry. Interesting!

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Roberto avatar

Roberto

Yes I agree completely with what you guys say about how ms acts in our lives , we thouse who have the problem suffered daily with it without knowing what the problem was , until I couldn't stand it no more and directed myself to a hospital to find out what my problem was and when in the hospital they figured out. It was me who did not understood anything then started to deal with and the ones who also have it know what I mean and definitely is not easy living with it but yes we are alive and lets better keep fighting and use what is available to us and see what the future has prepare for us with this problem and not loose hope something could be made soon enouh to help us with with this desease . yES DR whalts bit it but she was also a doctor and did what she had to do with the knowledge se also had , please don't loose the hope it is important to us . Roberto.

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Jamie Hughes avatar

Jamie Hughes

Keep fighting the good fight, Roberto. We're all in this together.

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Patricia lake avatar

Patricia lake

I live in LA area have found a dr sumner who does acupuncture it seams to be helping god bless you

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Jamie Hughes avatar

Jamie Hughes

I've always been curious about that. Maybe I should give it a shot. Glad it's working for you, Patricia!

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Ada montes avatar

Ada montes

I know the bomb effect after going thru so much unexplainable pain and weakness having the dreaded triennial neuralgia and no diagnosis. May 2017 finally was diagnosed with MS. And I've lost everything job, apartment, and no one to help me. After another hospitalization due to another MS crisis a social worker came to speak to regarding my explosiveness I mean wouldn't anyone feel how I feel I lost how did i lose. That got me diagnosed with PTSD.
Yes MS took everything but I'm still here trying very hard to live with this disease. And no it's not easy believe me it's not.

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Jamie Hughes avatar

Jamie Hughes

Ada, I know it isn’t easy, and I’m so proud you’re fighting with everything you have. You’re not alone, my friend. Reach out to a local MS Society chapter, find the resources and support you need there. Let them fight alongside you. Blessings for the journey.

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Tina avatar

Tina

Thank you I needed that. I don't want to get into the crime me details either but my life has changed completely but I think it's for the better and I'm glad to know I'm not alone so thank you very much from the bottom of my heart

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Jamie Hughes avatar

Jamie Hughes

Tina, you are so very welcome. And thank you for commenting and letting me know that this column helped you where you are in your walk with MS. I'm praying for you, ma'am. Be well.

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Annetta Farley avatar

Annetta Farley

Thank you for sharing , I've never read anyone describe it exactly the way it happened to me also
I was diagnosed 2010 after falling alot and vertigo and pain and passing out ,it was in the summer , I was admitted to the hospital and after a week of scans and MRIs spinal I got the diagnosis of MS .
I first was in denial then anger , numb , scared you name it I felt it . I've had many relaps but you have to keep fighting you keep getting out of bed every day and you push through the pain and I try to laugh alot , usually at myself .God Bless everyone .

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Jamie Hughes avatar

Jamie Hughes

Damn right, we do. Soldier on, fellow fighter. We're all in this together, Annetta!

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