Monday, August 9, 2010

The Many Faces of MS - A Mother's Perspective

People with MS are not the only ones who have to deal with MS. There are many other "faces of MS." I got this idea from Lisa who also has a blog about her life with MS (among other things) and I thought it was a great idea. This way I can involve my friends and family in my blog and you can hear from others about how my MS impacts their lives.

So this post is Part 1 of what I hope to be a weekly series for many weeks.
Please let me introduce you to my mother, Paula, who has agreed to share her perspective this week. Her comments are in blue.


WHEN YOU FIRST LEARNED I HAD MS WHAT WENT THROUGH YOUR HEAD?

When the doctor came into the office and the three of us were sitting there, I knew that the news was not going to be good. I had no idea what he would say, but I was not prepared for the extent of the diagnosis. Sometimes when people ask me what it was like, I tell them that when someone tells you that your daughter has Multiple Sclerosis it was like being picked up and slammed against a wall. And to look at the person next to you that you gave birth to and see the tears rolling down her cheeks, it was almost too much to comprehend. The doctor kept talking but I truly don't remember much of what he said other than Jodi was going to be admitted to the hospital. From there we kind of went through the motions of the admitting process.

WHAT DID YOU KNOW ABOUT MS (IF ANYTHING)?

I knew absolutely nothing about the effects of MS and what it was going to mean. I knew that I was looking at Jodi and she looked her same beautiful self and that was very comforting. To let you know what a terrific person Jodi is, the next morning, which was about 18 hours since the diagnosis, I turned on my computer and there was a web site for me to read with all the information I would need about MS. I knew right then that she was going to get through this and not let it be a hurdle.

MY LIFE HAS CHANGED SINCE I WAS DIAGNOSED WITH MS. WHAT ABOUT ME LIVING WITH MS HAS MADE THE GREATEST IMPACT ON YOU? HOW HAVE YOU DEALT WITH THAT?

I knew that I needed to call her brothers and her grandparents so while Jodi was doing some admission things with her Dad, I made the calls. I don't know what order I did it in - Tim wanted to come right away, Scott said the same thing and Allan was at Notre Dame and felt a little helpless because he was so far away. I then called her grandfather and, of course, the news was received with shock. The last call I made then was to my mother and that's when I fell apart. I was pretty out of control sobbing in the lobby area where I was standing, which I had tried so hard not to do. I was really trying to keep it together for Jodi's sake. After I got off the phone, I hadn't realized that a priest was watching me. He came over and comforted me and took me to his office. He said that he didn't want to pry but he was there if I needed him. He gave me tissues and kind words and I was able to pull myself together and go back to Jodi. I don't know if she knew I had been crying or not but hope that she knew I was still there in every way for her. My first instinct was that of mothering - I just wanted to be there and take care of Jodi in every way I could. I was never more happy than when she said she would come home with us for a few days upon leaving the hospital. I was feeling pretty helpless so it gave me a little comfort to be able to be a Mom. Now everything has changed. Jodi has shown me what it's like to be brave more than I could ever imagine. No matter what obstacle comes her way, she finds a way to deal with it. It's not always easy, but she just faces each new day with the same optimism as always.

Since being diagnosed with MS, I think Jodi has changed in some significant ways. It instantly matured her in ways that I'm sure she didn't expect. Her job as a social worker gives her a compassion that she shares with others, but her patience level and ability to share that compassion was what I noticed the most. I was astounded that she was more interested in how I was feeling and sharing information with me when she had every right to simply feel sorry for herself. That was not then, and has never been, the case with Jodi.

DO YOU THINK I HAVE CHANGED IN ANY NOTICEABLE WAY SINCE BEING DIAGNOSED WITH MS?

Honestly, I can't say that there have been any noticeable physical changes in Jodi. That's because she still looks the same and if you didn't know she had MS, you wouldn't know it to look at her. As for her personally, the changes are nothing but for the better. We were always close, but are even closer now. I get great joy just from sharing a simple activity with Jodi. Parents really never know how much they annoy their children - I found out on Mother's Day when she thanked me for being there for her that the nights we spend on the computer IMing are good for her as well as me. It's a simple little activity that keeps us close.

ANYTHING ELSE YOU WOULD LIKE TO TELL MY READERS ABOUT WHAT IT IS LIKE TO BE "ANOTHER FACE OF MS?"

One of the "good" things that have come out of all this is that it has seemed to bring our family closer together. Jodi set up a team to walk in the MS Boston walk and for the last 2 years it has been quite a success for "The Bean Team". It is inspiring to see all the teams walking along The Charles River and knowing that, just maybe, it is helping us get closer to a cure. Being a Mom in all of this is just what you might expect - there are tears, but also lots of smiles along this journey that my daughter is on. It is a privilege to share it with her.

Thanks Mom!

Love, Jodi

1 comment:

  1. Jodi, this is great! I'm very flattered that you've decided to do this...and even more interested to follow your interviews. Reading your Mom's words feel so very familiar. She made me tear up. I hope you are doing well and keep up the good work you are doing with your blog.
    Lisa

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