Uninvited Commentary Invites Enlightenment

Uninvited Commentary Invites Enlightenment

Jennifer Silver LiningsLast week, I flew home from San Francisco. As I walked up the jetway, I moved to the right and held the handrail to allow others to pass. Once in the airport, I proceeded to baggage while showing another passenger where to go. As we parted ways, he looked at me and asked if had a “hiccup in my giddyup.” I smiled politely and said I had multiple sclerosis.

His demeanor immediately changed as he delivered the all-too-familiar apology for my affliction. His voice dropped an octave before becoming serious. His co-worker’s wife had passed away from MS. Like me, she was young, pretty, and she did not look sick. What a shame that such young, pretty women could die from MS.

*File under things not to say to someone with multiple sclerosis.

I no longer take offense at the things people say. I have developed a thick skin. While I am empathetic, I do not benefit from hearing about an MS-related death. Whereas comments such as these used to upset me, they now only mystify.

Stereotypical myths about multiple sclerosis persist. And sometimes people simply do not know what to say. Most meet the knowledge of my diagnosis with a combination of shock and pity. I favor neither and I have a visceral reaction to feeling pitied. I hear so often sadness for my diagnosis or shock that I am happy despite it. I also see true confusion because I do not look “sick.”

Join the MS forums: an online community especially for patients with MS.

I am a strong, happy woman with a beautifully blessed life. Multiple sclerosis does not define me. Do not feel sorry for me because I walk more slowly and with a loopy gait. I am going places at my own pace. Do not be surprised that I am happy and outgoing. A good attitude is the best medicine. Do not correlate my outward appearance and my disease. MS is often an invisible illness, and I am grateful the gravity of my pain is not always evident.

So often people tell me I am lucky because I can walk, that I am not in a wheelchair, I can drive, I can laugh, I can talk, I can write, I have support, I have health insurance, I have a husband, I have my faith, etc. While I am extremely blessed to have much of the above, I don’t often feel so lucky.

I do not feel lucky when I can’t speak properly or relay my thoughts. I do not feel lucky when my food gets stuck in my throat and I can’t swallow because of damage to correlating nerves. I do not feel lucky when medical bills mount and insurance does not cover therapies. I do not feel lucky when my hands burn, tingle, and hang heavy with such painful numbness that I am unable to dress myself.

I am not lucky; I am incredibly blessed. Any grace is God-given. I am humble yet also deserving of those things I have worked hard to attain.

I have come to expect crazy and uninvited commentary. I am certain you have all heard some of your own. I encourage you to look at it as an opportunity to educate, empower, and enlighten.

If not us, then who?

***

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.

14 comments

  1. A friend was introducing me to his second wife. I don’t know if he expected me to hear or not, but he said to her “such a shame, she was knockout”. Not as bad the “pretty girl, then dead comment” but it made me feel bad.

  2. Sheri Aragon says:

    I myself have MS..I have 2 sister’s that have it as well, your story is heartwarming. But it’s not MS that you die from it, it’s all the other ailments that cause ones demise and that’s very heartbreaking…

    • Cheryl says:

      I personally know two young people (in their early 40’s) that died from complications of PPMS. If they hadn’t had MS they wouldn’t have died so I disagree, some people do die from MS. In the end it may have been the pneumonia etc. that was the final straw but it was the MS that caused it. By saying people don’t die from MS it takes away the significance of the devastation of this disease.

    • Jeanne says:

      Please excuse me Jason, but that is a very naive comment. HSCT typically involves destroying ones immune system with chemo and/or radiation. Not everyone with MS could tolerate the severity of the amount of chemo to do that so they are advised NOT to seek HSCT. Many clinics won’t eve allow people over 55 to do HSCT because the risks go up with every additional year. Even people under 55 are advised not to do HSCT due to other complications they could face. Everyone’s journey with MS is different and there is no “blanket” cure.

  3. Jennifer says:

    I am 38 and just diagnosed with MS this week after 8 years. Now everything I’ve gone through these past 8 years makes sense. Now I know why I hurt some days and feel normal the next. Why I can’t swallow one day and not other days. Why I can’t speak some days even though I know what I want to say. But at the same time i didn’t know how to feel about having ms, I’ve felt numb the past couple days. I really needed this article today and it helped change the way I was looking and thinking about how life was going to be. Thank you for sharing this!

  4. Hi Jennifer,
    thank you for your thoughts. I am totally with you.
    Although some of my symptoms are to the lower limbs, it is quite similar. I have a weard walk :). Everything else looks “normal”.
    Sometimes I get asked “why do you have priority in queues?” or “why do you have that disabled badge for parking?” … if you can work in several countries, travel for business or pleasure, if you can drive, if you can give some speeches, if you….. bla, bla, bla…
    All that takes courage, training and a lot of work. Very few people know about the time every week some of us spend in therapy, the medicines, the exhaustion. Generally, all everybody see is our smiles, even for the pities. And that takes training. A lot of good and healthy training. God bless you.

  5. Bonni Hamilton says:

    Thank you, Jennifer. I have experienced similar interactions and while I used to get angry — “how dare you assume anything about me?!” — I’ve become more philosophical, educating one ignorant commentator at a time 😉

    Take good care and stay true to yourself!
    Bonni

  6. Al Miller says:

    Awkward! I was told over the last three days that I was, “My hero!” “Living your life!” and another comment that I can’t remember..cog fog.

    Because I was using my outdoor rollator to walk on the beach and on a a very difficult forest path in Parksville on Vancouver Island.

    I’m a 71 year old male so it goes with that territory. I have lots of hand and shoulder pain but I don’t notice it when I’m walking.

    I wear magnetic button shirts and big T-shirts so that I can get them on. Constant accommodation.

    But I’m living a wonderful life and every day is a good day!

    Thanks for your writing.

  7. Allan Miller says:

    Awkward! I was told over the last three days that I was, “My hero!” “Living your life!” and another comment that I can’t remember..cog fog.

    Because I was using my outdoor rollator to walk on the beach and on a a very difficult forest path in Parksville on Vancouver Island.

    I’m a 71 year old male so it goes with that territory. I have lots of hand and shoulder pain but I don’t notice it when I’m walking.

    I wear magnetic button shirts and big T-shirts so that I can get them on. Constant accommodation.

    But I’m living a wonderful life and every day is a good day!

    Thanks for your writing.

  8. Don says:

    I fly Southwest and while I am not at the stage where I feel the need to get a blue card and special treatment, I feel some respect is in order. Have been nearly knocked over on the jetway by baggage handlers who apparently think I am going for a leisurely stroll. I am not really walking slow, but I am not walking hurriedly so as not to lose balance after a long flight. You can tell their intent by how fast they come up to right on your heels, grunting and then trying to brush past. Air travel is a bitch for trying to maintain independence, for many I think.

  9. Matthew Coil says:

    Thank you for eloquence in expressing how you feel and how you deal with your disease.

    I have a younger sister that died at age 51 from her MS in 2006. She has a daughter getting married this month. There is such sadness in her heart that her mother is not here for this blessed event. We all carry burdens such as yours. Keep your chin up and keep smiling through the pain. Thank you.

  10. Maree Dollin says:

    I loved reading your comments Jennifer and I know we can all relate to this. I an 52, and an Aussie and have Relapsing Remitting MS(diagnosed 10 years) and C.I.D.P (diagnosed 19 years) and I have both good and bad days. Bad days usually involve an extremely difficult cannulation (every 3 weeks) and my stubbornness to get a port.
    Somehow.. in my mind, this has been the holy grail for being like everybody else. If I don’t have a port as a constant reminder of my conditions I can be…like everybody else. Crazy I know.
    I have gotten used to scars so it is not that and I have many of them… from years of unsuccessful fertility attempts which resulted in a ruptured bowel, ileostomy, reinflated lungs etc etc so, it is not the scar.
    Dont’ get me wrong, I have a Great life. I work full time in an interesting stimulating job, I have an amazing partner, great family and medical support.
    Maybe, in my sometimes foggy brain this is my last stand.
    Luckily, no one can see my scars (the bikini is a NO) and my gait is not too bad.
    But my body and conditions have ruled my life albeit in the background and many people including my co workers are not aware I have 1/2 day off every 3 weeks for my treatment or the struggle some mornings to get my butt out of bed. Many have also forgotten my years of fertility struggles.
    But this port thing which I keep putting off and suffering 6 cannulation attempts to my scarred and dodgy veins every 3 weeks is what I struggle with. That little port…
    Sometimes it is just the little things 🙂
    Maree

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