The MS (group) Hug

Several months ago I signed up to attend monthly meetings organized by the MS Society. I’ve been getting phone calls and emails about the meetings religiously, but blew it off for one reason or another. Today I decided to show up.

About a dozen “MSers” sat around a long table drinking coffee. The group consisted mostly of older women, a few middle aged men, some with canes and walkers, another in a wheelchair. One gentleman rode in on a bicycle which made me smile. A few came with their caretakers, another with a service dog. We each were invited to talk a little about any trips we took this summer, or trips we were planning. I talked about my wonderful week at my friend’s Alpaca ranch in Idaho. It was much more than anything the others had done over the summer: a fondly remembered day trip to a casino for one young girl in a wheelchair, a few days in the pines for a woman about my age.

Carlos sat across from me. Young and seemingly healthy in a tank top which showed off his tattoos, I liked him immediately. He was quiet, self-effacing, confident. He began to speak. Carlos is a Marine. He and his cousin joined together and got through the rigors of boot camp together. Carlos said that boot camp was difficult on a psychological level, but the physical part was not too tough for him. He and his cousin graduated and went on to Infantry School where hiking miles on end with sixty pound backpacks was a daily activity. Carlos began to fall behind. He couldn’t keep up with the cousin he had competed with his entire life and he had no idea why. He thought he was just tired, missing his family, maybe a little depressed. But still, he fell further behind the rest of his class with each day. He was sent to see a doctor and given the diagnosis of MS. Carlos is nineteen. He now makes pizza and dreams of making enough money to live on his own.

I was diagnosed with MS at 56 years of age. After I’d seen the world, had babies and walked and swam and done just about every damn thing I wanted to. I snorkeled in the Bahamas, rode an ATV in Cancun, smelled the juniper from the back of a Harley, stayed up all night and partied all day. I’ve never been as thankful for that than I am today, or as guilty about the amount of time I’ve wasted feeling sorry for myself. Because there are people, young people, who are struck down with this unpredictable disease in their teens. People who have to put their dreams and goals away because they are too sick to do much except…be sick.

I’m not sure if I’ll go back to the MS group. There was a lot of complaining and few answers for me and the negativity frightened me. I saw what I was about to become…

Until I met Carlos.

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Comments

View Comments (4)
  • Nancy W
    2 years ago

    Allisonjo. Thanks for sharing this. It reminded me to be grateful. I was diagnosed at age 47, in 2003. By mid 2004 I reduced my work to part time. In 2007, I stopped working altogether.

    Your story reminded me of the positive self talk at the time. I had my two children at ages 18 and 21. By the time I was diagnosed they were on their own. I am thankful that I managed to work throughout their childhood and young adulthood, which can be the most expensive time as a parent. Somehow, we managed in the last 10 years since I stopped working.

    Now my husband will be retiring soon. I have been feeling a little sorry for myself because we don’t have as much money as we would like. Your story reminded me that we managed before and will continue to do so.

  • Ivy.
    2 years ago

    Thank you (again) for your answer.
    I’m not an English native speaker but I like to try to express myself anyway.

    My first story has been published here on the 21st July 2017;
    “It’s not like if you had multiple sclerosis”.

    I also started a bilingual website (FR/EN) recently to improve the relationship between caregivers & care receivers by sharing references and experiences. Till now, I’m the only author (Charly) but I wish it could be a participative project from several people around the world. Take a look at the link if you could have any interest.
    http://canyoutrust.me/index.php/en/

  • Ivy.
    2 years ago

    I’ve been a teenager with MS at the same age as Carlos. Mostly, the people with MS I met don’t understand. They told me it’s better like this because “we can take drugs earlier (means better prognosis), we don’t have to rebuild but just to build our life”. They said they was envious of me.
    I’m not agree, after 15 years with MS, I’ll be only 34, I’ll not be the same but still younger than many people who never had relapse yet. And that’s okay. I don’t need people to think my case is worst, I don’t think like that either but I don’t want to hear that’s better and I’m lucky cause it’s not true. Nobody should try to compare their illness to each others, even if it’s the same disease. “Each MS is different.” Even if a big part of us know that, many people try to guess what’s going to happen to them looking to others.

    Maybe it’s the best part with the meeting group, it’s when you meet other persons with MS than you realize this is not about your story. I’m not afraid to spend time with people in wheelchair, I also met and talked with someone who developed PML, but this is not about me, not about you.
    It is a part of the story of one person’s life.

    Thanks for your words, it goes straight to my heart.

  • AllisonJo author
    2 years ago

    Thank you, Ivy. Your kind words mean the world to me. This: “you realize that it is not about your story”….so true and a important for me to remember.

    I appreciate your wise ciomments. Do you write? If not, you should.

    Allison

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