Jeanie on Living with MS by Danny Harris

Danny Harris is a DC-based photographer, DJ, and collector of stories. In September, he launched People’s District, a blog that tells a people’s history of DC by sharing the stories and images of its residents. Every day, People’s District presents a different Washingtonian sharing his or her insights on everything from Go Go music to homelessness to fashion to politics. You can read his previous columns here.

“I had my first overt symptom of multiple sclerosis (MS) two days after my 24th birthday. My right foot became paralyzed and I kept tripping over my feet. While my foot eventually got better, my overall condition became progressively worse. At the time, I didn’t know anything about MS. One day, I was in my room and looked up MS and the symptoms seemed consistent with how I felt. I told my Mom that I thought I had MS. She looked at first like she was going to dismiss it, but then she saw that I was serious. I began to cry and then she started crying too. I was not officially diagnosed until two years later.

“At the time, I was living in Mt. Pleasant and had a job that I loved with an aerospace association. The truth is that I know nothing about aerospace. I don’t know jet lag from a Safeway bag, but I worked in customer service. My work was great and allowed me to travel. Eventually, I became too sick to work and had to retire at the age of 27. After that, I moved home with my Mom and quickly went from a cane to a walker to a wheelchair to a motorized wheelchair to being bed bound. This is like a designer disease. It is like couture, if you will. It is tailor made for you. I have three distant cousins with MS, two of whom are sisters. We all experience this differently.

Continues after the jump.

“About three years ago, I lost the ability to use my arms and hands and it became too much for my Mom to take care of me. She did an awesome job, but I needed to be in facility care. I know that this is hard on her and she feels guilty about me being here. Her guilt pains me because I adore her so much. I just wish that I could make things easier for her so that she can relax and enjoy her retirement. She was a police officer and these were supposed to be the easy years for her. Hopefully, me being here makes things a little easier on her.

“Now that I am mostly bed bound and in a nursing home, I don’t go anywhere. Still, I have met some wonderful people here. I have been adopted by a church downtown and the deacons come see me every week. I also have met some of the incredible people living in the home with me. That is important to me because with this disease, I lost a lot of friends. I can’t really be angry at them because life goes on. A lot of my friends have their own families and other commitments. With some people, if you don’t get well quickly enough, they get impatient and move on. Other people may just be uncomfortable around illness.

“In the end, I just have to laugh at the absurdity of it all because if I don’t, I am going to freak out. When I graduated from Regina High School 23 years ago, I could not even imagine being 40. Now, I am 40 and living in a nursing home. I actually call it my luxury jail where I am serving life without parole. All jokes aside, it is not as bad as one would think. I am not saying that it’s the bomb and everyone should come to a nursing home, but things could be worse. I know that may sound weird, but it is true.”

“Looking back on these 16 years, I never said why did this happen to me. To me, that is like saying why not someone else. I would never wish this on anyone. I remember after I got sick, my little sister started tripping. I cringed because I remember when my foot went paralyzed and I would trip a lot. I just wanted to hug here and squeeze all of the MS potential out of her. Thank God she is allright. Thank God this happened to me and not to her.”

Please consider donating your time and/or money to the National MS Society. Learn more about the society here.

25 Comment

  • That is awful. Why do you need to feature such a depressing story on your blog? That’s the last thing I need when doing my morning reading.

    • bfinpetworth

      Dude, you need an attitude readjustment.

    • What a selfish thing to say. POP, please don’t let this become a place for trolls, they infest web sites with ugliness.

      I loved the story and I think Jeanie is a great individual for being optimistic is the face of adversity. I especially liked the part about not understanding Aerospace, so many of us work in industries we don’t fully understand. Its good to know that despite how promising life can be, things are still promising when we simplify our lives as well. A cure will come, hang in there! 🙂

  • She’s an amazing person for staying so upbeat!

  • welcome to the real world there Rob. Life ain’t just Door of The Day, swanky beer and wine bars, housing prices and dog parks, etc…life is about chance, hope and death as well.
    I appreciate the article Mr. Harris and PoP.

  • Rob is a fool. This story is the opposite of awful. Thanks for sharing your story with us and showing that the drama and beauty of life doesn’t stop at the nursing home doors.

  • God bless you Jeanie! Stay strong.

  • POP, I am also glad that you choose to feature real stories about people living in our city. It is good for all of us (maybe Rob especially) to be reminded that there are people out there that face bigger problems than most of us can even imagine. It is quite humbling, actually.

  • Completely agree – People’s District is a great part of this blog.

    Jeanie, thanks for sharing your story – it altered my perspecive on what’s going on, at least for today, but hopefully longer.

    captcha: moral loftily

  • Thanks for this post. Jeanie’s story reminds me to not take what I have for granted and be more of a friend to my friend with MS.

  • I am sure Rob didnt mean to write that. He is just an immature little prick.

    • Yes I did. It’s not pleasant morning reading. That is fact. And by sympathizing with someone to the point of being disturbed, I am “an immature little prick?” Sense. That makes none. Look in the mirror for someone that fits that description.

  • I have a distant relative with MS.

    The thing with this disease is that it comes in phases. You could be fine weeks, months or years and then there could be an attack and the attack could effects the nervous system that paralyzes you.

    So far my aunt is able to walk and do some chores but cant stand for too long and its only a ticking clock. She has a 5 year old son and my heart just cries when I hear that she isnt able to do even simple things like cook a good meal for the kid.

  • I work/worked with three people who have MS.
    One person had the disease progress really quickly, and is too impaired to work. One is a versatile leader, the other is a really good manager who uses a motorized scooter now but in the last few years has been still plugging away but in a less demanding assignment.
    MS is f-d up, and it can be so unpredictable.
    This story made me want to get a van and take Jeanie to the beach with me, she seems like a really upbeat person.

    • You could take her with you, but she wouldn’t be very much fun at the beach.

      Just kidding. She is amazingly positive and I’m not sure how. It’s almost delusional…

    • That is a really good idea DC Gal, only if it were that easy to do something like that. (Even if you had the money) the liabilities and other official formalities would almost make it impossible for anyone to do that.

      I hate how non profits ask for money for research etc., they should do something for the people who have the disease to make their lives comfortable and happy, they surely have the money and people to take care of all the legal work etc.

      Yes, the money for research would be beneficial for the future generations, but it would be of no use to the people who are already suffering from it, and perhaps a trip to the beach would make their monotonous life much more cheerful.

  • This story is touching and inspirational. My mother, who is pushing 70, has MS and is still able to walk, albeit very slowly and for short distances, drive and do many other normal things. Her younger brother, however, is in a situation similar to Jeanie’s but sadly his outlook on life is not nearly the same.

  • Someone has to say it: Rob is a total ass.

  • If I may chime in, The National MS Society, who Jeanie links to at the end of her story, does indeed offer financial assistance, visitor programs, support groups, classes, etc. for people living with MS and their families. In addition to funding research and grassroots advocacy.

    [Full disclosure: I work there.]

  • Incredibly touching story. Thanks for running it and my prayers to Jeanie.

  • great interview!

    diversity is more than just the color of the outside of your skin, no?

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