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.
Dan, a beautiful, impassioned post. Coming after Jennifer’s post brought tears to my eyes. Wishing the both of you whatever you need to rise above.
The quiet courage both you and Jennifer embody is a real testimony to what is best in us. MS is a thief. No question about it. It also happens to be vile in that it steals from so many of us the ability to contribute to the world all the magnificent things we know we are capable of. And so we trim our sails and adjust course and still do our best to contribute value to life. You and Jennifer are doing that absolutely. I can only wish that you find surcease from the sorrows, pains, and obstacles this contemptible disease brings.
You do have the most unique view I know of and wow! what an entry.
Caregivingly Yours, Patrick
It’s surprising how sometimes MS can bring out the very best of us. I know it has for you.
You are so lucky to have one another. We are all blessed to have the two of you. Thank you for the example you set and for teaching us how to live.
Michael