Waking up to my MS realities

My lifelong friend Nora (she’s the bridesmaid to my left in the pic) and I were standing in a crowded parking lot in Chicago. She was strategizing how to get her poorly parked car out of the lot.

Junior High School – Nora and me

She also was trying hard to convince me, “Come on Jen, it will be fun! And it really isn’t that far of a drive back to Michigan.“

It all made perfect sense to her. Honestly, it made perfect sense to me as well.

I’m assuming we had been drinking, so of course everything made perfect sense to me. Nora is fun to dance, party and drink with, and I certainly would head back to Michigan with her. I was looking forward to taking this five-hour road trip. Oh the adventures we were going to have. All we had do was get her car out of this congested Chicago parking lot.

Then, out of nowhere, that darn voice came in and ruined everything. Ughh!

The voice actually was my radio alarm clock.  The morning DJ had told me that it was time to wake up, stop dreaming and start my day. 

Dreams can be so disappointing and deceptive like that. Just moments earlier, I was young and having fun. Walking? Not sure. But there certainly was no need for a wheelchair or handicap accessible vehicle in my dream.

Grown up – Me and Nora

Dreaming of life before MS

Again, dreams can be so bittersweet. Don’t get me wrong, I am happy today… well, pretty happy. After all, I do live with Secondary-Progressive Multiple Sclerosis and completely rely on a power wheelchair.

But my dreams are a different story. I walk in them. I have no cares or worries. No concerns or frustrations about disability, caregivers, spasticity; my life’s daily MS battles and frustrations. Instead, I always am young, careless, healthy.

These dreams give me hope, but they also make me sad. Do you know what I mean? It feels wonderful to be the way I remember myself being. And to live free of MS. 

How about you? Do you still dream of what your life was like before MS or other current challenges you’re facing? More importantly, do you still have dreams of what your life can become?

I still do, and I try to focus on the hope that my dreams give me. The real hope that exists—hope because of the number of people who are living with the disease, the available disease-modifying treatments, and all of the amazing people (like Nora) who are with me in this fight.

And I continue to look forward to the day my dreams once again become my reality.

One comment

  1. Hi Jennifer,
    Thank you for this post! Greetings from Switzerland where I live.
    You are a very brave woman and I commend you for that. Thank you for so much positivity in your posts, but thank you also for being honest with what reality looks like for you and for Dan, with this disease.
    And thank you for daring to ask big questions like you do in this post regarding dreams. I dont know if this is actually a blessing or not, but I barely remember any dream. And I am not even really sure I know how to dream with open eyes and using my mind to project myself in a future I guess I would enjoy. Sometimes the weight of uncertainties seems so much to bear, isn’t it true? Taking life a day at a time, staying firm also in my Christian faith are the only options that seem relevant to me at this time to go on with serenity. But sometimes I wish I would dream more often or at least remember good dreams or know how to dream consciously…
    I was 15 when I experienced the first MS attack. The diagnosis was confirmed to my ears the very day I turned 18 and started my first injection treatment.
    I will turn 41 years this upcoming spring and until now I was able to keep my job as a special educator working with adults having special needs. Despite some attacks and other hallenging times related to the relapsing MS I live with, I have so much to be grateful for! The disease has not been progressing a lot so far in my case…
    After an MS attack last year with a long recovery process and now accute fatigue experienced since last month after I got exhausted at work, I wonder if I could still start dreaming about what my life could become, even if some MS symptoms should now be more permanently a part of my daily life. Other non related uncertainties are part of my life also for many years, so I wonder if not dreaming is kind of a protection for me to avoid future disappointments…? But maybe that dreams still improve life’s quality because they help one escape what current reality forbids to envision…?
    Well, sorry for such a long comment… But you see, somehow you inspired me to openly share about this topic of dreams I have questions about…
    Anyway, I am glad I discovered your blog today. I thank you and Dan again for sharing about your life and love and journey with MS.
    Kind regards from the other side of the Atlantic and sorry for possible mistakes, English is not my native nor primary language (Swissgerman and French are!).
    And may your dreams indeed come true!!
    Sabine

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