So the journey begins… my relationship with Multiple Sclerosis

Written by on March 5th, 2013 – 10 Comments

I always knew that one day I would take care of my parents.  I knew I was part of the ‘sandwich generation’ > folks who would, at some point, take care of both their own children and their parents at the same time.  My mom turned 50 last week… I thought ‘one day’ was 10-15 years away.

The stroke that wasn’t a stroke (not even a TIA) followed by partial paralysis that lasted months;  the loss of function in her hand that eventually came back, months later.  The July morning 2 years ago when she woke up and couldn’t walk.  Except for a brief respite last summer, she hasn’t walked since.

Finally, what we never hoped for

After years of life-changing symptoms… we finally have a diagnosis:  My mother – my beautiful, young, vibrant mother – has Multiple Sclerosis.  She’s never going to walk again.  She’s never going to chase after butterflies with my girls again.  My two youngest will never remember my mom without a walker or a cane.  My oldest asks why her grandma can’t push her on the swings anymore.

I’m angry.  Angry at the doctors that never put 2 & 2 together.  Angry at the genetic makeup that made her susceptible to develop MS.  Angry that she can’t be there for me the way I need her.

I’m sad.  I’ve read everything I can find and I can’t unsee the mental images of my momma battling end-stage MS.  I’m sad that she has to be in so much pain.  I’m grieving the future she’ll never have.  She has so many good years ahead of her, but will they be good?

I’m angry that I’m sad.  I’m angry that my life has been turned upside down, and I feel like I’m being a selfish brat.  This isn’t about me – it’s about her.  It’s not MY disease… but it is.

My mom… she’s aged so much lately, and that breaks my heart.  I’m not ready.  I’m not ready to lose the mom that I know.  No matter how old, a girl needs her momma.  I’m not ready to watch her get old; she’s not supposed to grow old right now!  It’s not fair… But the kids are waking up now, so I’m going to wipe up my tears, grab a coffee and pretend that for now, my world is ok.

And so the journey begins!

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10 Responses

  1. Gale says:

    I have gone thru this since 2008, its sucks can’t do anything still not dealing well with this, I realize there is much more worse ie: cancer. Pills pills well that doesn’t help. Not having work is my greatest fear ever..government is no help they pay enough to buy toilet paper.

    K just vented enough this is just very hard to deal with.

  2. Stephanie says:

    My SIL has MS. I watched it start from a small slip down a couple of stairs, pregnant with child #3, then the Bell’s palsy shortly after her youngest was born, then the months of recovery and trying to figure out why she couldn’t shake the constant numb feeling in her left hand. To the diagnosis, treatments and experimental chemo treatments. Her young children and a$$ ex-husband you still think nothing is wrong with her when its as plain as the nose on your face. I understand what you are going through. While I am not taking care of her, I have taken responsibility to help when we’re together, cutting her food up because she can’t. How hard it must be for them not to be able to perform the simple tasks anymore. I’m someone (sort of) like you. Best wishes.

    • Thanks for your kind comments Stephanie! It’s actually gotten better since I wrote this post, she has gotten in-home personal care worker twice a week, in-home physio, and she’s on a drug / vitamin regimen that for now is working wonders. Plus, she gets her new custom wheelchair this week and her spirits are up 🙂

  3. Iwonder says:

    As a person with MS I can whole heartedly say that the only thing that will get any of your family through this, is attitude.

    Feel all those emotions, but transcend your emotions through action for the betterment of all your lives.

    This is not game over, it’s game on and don’t you dare give up from the beginning.

    Research ( there is so much out there ), motivate, educate and you will find happiness through this.

    Because of your mother’s illness, you can now bond over the simple things, for better reason.

    Share in cooking – a gluten free meal that can help reduce inflammation.

    Share in sunshine – enjoy the outdoors and vitamin d that improves all symptoms of MS, and YOUR mood.

    Share in rest – a time to recoup, reflect, find peace.

    There is so much you CAN do.

    Let this disease teach your children, friends, and self how to prevent ailments, and overcome.

    Please, be well and all the best to your mother.

    • Thanks, Iwonder – for your inspiring words! We do that as much as we can right now, as her house is not accessible therefore she’s confined to the 2 rooms on the upper level where she can access the only washroom in the house – we’re looking for a new home for my parents, but since I wrote this post things have actually gotten a lot better. She has more help, and it’s easier being with her cause we can actually spend time together now, it’s not just us taking care of her.

      We laugh a lot – when she was jerking around like crazy we joked that I would put her in the tub with my laundry 😉 During an MRI she told the technician she’d be a great ‘personal massager’ for an elephant. We’re finding humor in the little things, and that really helps.

      Thank you so much for your kind words!

  4. Jan says:

    Wow!! I have had MS for almost 15 years now and never have I read anything like this. Your words help me see this disease through the eyes of my children (both daughters) so clearly. Thank you for your candor and honesty.

    • Thanks, Jan. When I originally wrote this post I got a lot of flack from my family- they all thought i had given up when in fact i had to take a good hard look at my emotions, see them for what they are and accept that what i was feeling was completely normal.

      I’ve learned that it’s ok to have all these feelings, as long as I don’t let them fester. We’ve always been open with each other but we’re more honest now than ever, and that has brought us even closer.

      thank you,

      • Jan says:

        Yes, in many ways MS can be a gift if you see how it can make you realize what really is important. Family is number one and I am so happy that MS has brought you closer together. Keep it up and keep loving each other!

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