An MS caregiver’s cry revisited: Take me

As I sat out in the living room reading my book for graduate school, I heard Jennifer back in the bedroom crying in pain.

The damn trigeminal neuralgia had woken her from her nap. It’s the sharp nerve pain for which she just wrote about in a guest post on MSlisaSAYS that appeared later in the afternoon.

I went back to comfort my pain-stricken wife, known that my presence was the only thing I could provide for this situation. Like Jennifer, I too felt totally helpless.

And so, all could do is kneel at her bedside, hold her hand, and curse the disease for being so mean to her. I’d gladly take it all if I could. With that, I was reminded of an essay I wrote more than two years ago. I hope you understand …

I always thought I could handle whatever MS threw at me.

Numb hands and feet all the time. Tingly torso and cheeks when I’m tired. Weak left leg after I run two miles. I’ve managed all of these symptoms since I was diagnosed.

But after nearly nine years it has found my weak spot, and all the trash talking I throw back at MS won’t help me on this one.

All I can do is humbly ask MS to leave Jennifer alone.

She’s gracefully moved forward with everything MS has thrown at her. Taking away her ability to walk and stand without help from others. Limiting use of her left arm. All of this has stripped Jennifer of her daily independence and pursuing opportunities to put her college education to work and to go anywhere by herself. And most recently she’s dealt with and written about the return of her trigeminal neuralgia.

Still, she puts on a brave face to mask the hurt she feels inside. We both know it’s there, but to soften the pain it all is causing me, my compassionate Jennifer softens her eyes and smiles her infectious smile to let me know she’ll be OK, just for me.

Deep down I am so mad and want to lash out at MS for what it’s doing to my wife.

So many times I find myself – as a caregiver of someone with MS – feeling like Father Karras in the climax of the movie The Exorcist. According to the YouTube description of this scene, which is linked here (it’s a little violent and includes some vulgar language), “Father Karras fights the demon inside Regan and implores it to take over his body and leave Regan alone. He becomes possessed, freeing Regan, and commits suicide before he can harm her.” The unfortunate thing about this ending is that it, in a sense, allowed evil to win. I won’t let MS win.

I often share her cries of how unfair this disease is for everyone living with it. I have the same disease as Jennifer and how I wish I could share some of Jennifer’s burdens. And I know that Jennifer, also a caregiver for someone living with MS, feels the same in wanting to share the burdens I have in overcoming the challenges of the disease.

Unfortunately we can’t magically share the ill effects of this disease, and I can’t exorcise the demon that is MS.

So I faithfully pray to God that he gives us both the strength to rise above what comes our way. And I angrily tell MS it can go straight to Hell.

5 Responses to “An MS caregiver’s cry revisited: Take me”

  1. Brenda says:

    I understand your frustration, I too have felt it through the years as family members have suffered so much and here I am with MS and doing better than them but God has his plan even tho none of us understand it. I pray for relief for Jennifer from the pain. Both of you are such an inspiration for help for others.

  2. Judy says:

    In a most authentic way, both you and Jennifer exemplify heroism.

  3. Jodi says:

    I wish there were more treatment options for Jennifer. It must be so hard on both of you. Thanks for continuing to raise awareness!!

  4. I have a friend who often says that “God never gives us anything that we can’t handle it”. I know this is true. I know it because despite her pain, Jennifer keeps going. truly a hero and an example to all of us.
    There are so many pains that can be associated with MS. I have Lehrmittes syndrome which I say is the one condition that causes me to use expletives. I describe it as feeling like someone had stabbed an ice pick into my shoulder blade.
    How do I deal with It? by knowing that it will pass. Knowing that it will pass helps me deal with many of the things that MS has brought me. I am betting that Jennifer knows that too.
    Thank you both for your strengths and example.
    Michael

  5. My Odd Sock says:

    Very touching. Thank you for sharing your thoughts, feelings & pain during a difficult MS moment.
    With you in spirit.

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