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.

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“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.