The Event That Changed My Life Forever

My name is Carol Norris, I have MS. So many people are affected by MS in so many different ways. Whether it’s the person who suffers from the disease, to the children who are affected due to a parent suffering from MS, to the caregivers who care for those who have MS, we each suffer in different ways and have different perspectives. My youngest Daughter, Tina, who is now 20 years old, is one such person. Below I am sharing a story she wrote and she would like to share about how she’s been affected by my,(her Mom) having MS.

The Event That Changed My Life Forever by Tina Norris

It will be ten years ago in February. Ten years ago my family’s life drastically changed. My Mother, Carol, was diagnosed with MS (Multiple Sclerosis). I was only nine years old when this happened, but I remember everything from the day they sat me, and my then eleven year old sister, down and tried to explain to us what was going on.

It was a Sunday morning, one that started out like any other. We all got up and went to church, as we always did. After Mass my parents told my sister and I to head down to the basement. We did, and they followed. They sat us down in a back room area of the church, and it was silent. Being only nine years old, it was still easy to see that something was not right. I remember my mother’s friend saying, “Alright girls, your mother has something very important she needs to tell you.” Then my mom came forward, and told us she had gone to the doctor, and they told her she had a disease called Multiple Sclerosis. It was a disease that none of us were familiar with. Being nine years old, I knew it wasn’t a good thing, but because I didn’t know what it meant, I didn’t know how to feel. I remember looking at my sister, she was crying and everyone was focused on her. I just sat there… not knowing what to do. The final words of that afternoon were, “none of us know what to do, but we will all get through this as a family.”

Growing up with a parent with disabilities definitely has its challenges. Dealing with all the doctors and different specialists, was one of the first major things we had to deal with, and as the MS progressed and got worse, the changes we had to make as a family got more extreme. We had to change how we lived in many ways. We were looking for a new house at the time and for most people it wouldn’t be a big deal, they just get what they like and can afford. But we now had to find a house we liked, a house we could afford, and a house that will work for my mom in the future. MS story Multiple Sclerosis is a disease that can cause loss of balance, impaired vision and hearing, fatigue, muscle weakness and, in some, paralysis. Even simple everyday living skills become increasingly difficult, so when looking for the house we had to be sure we could find one with a first floor bedroom, bathroom, and kitchen area; so when the MS got to the point where my mom could no longer do the stairs, we would be in a house that she could still live in and stay as active as possible in. Part of living with it was dealing with the changes, knowing and learning to except that my mom would have to take a nap every afternoon, and would have to be picked up by the doors of stores when we go grocery shopping so that she didn’t have to hurt herself trying to walk more than she physically could. The biggest change we’ve had to deal with in living with it is when it came to the point that the MS got bad enough that my mom had to get a Power Chair for in the house and a Scooter for when she wanted to be mobile outside. Seeing a parent in a Mobile Chair is really hard. It’s also the newest and the biggest thing that’s happened since the day she told us she had MS.

I don’t want to say that living with a parent with MS changed me, because I was way too young when it happened to even try to figure out who I was going to be as a person when I grew up. But I will go as far as to say that growing up with a mother who has MS has probably made me a different person than I would have been if I had grown up with two healthy parents. It has also made me different in the way that I feel the need to go out and help, or at least offer my help to others who might need someone to talk to. Especially if they are going through something like this with a parent or other loved one getting hurt or being sick. I also feel like having to deal with something like this at such a young age, made me a stronger of a person. It taught me to deal with things, to take whatever comes at you and just try to make the most of it. In the past couple years, I decided to get out and start doing something that may be able to help the people and the families of the people who suffer with MS all over the world, I’ve started doing this by fundraising and getting out there and doing the MS Walks. Every spring there are MS Walks. My family and close friends get together to make up a team, and we raise money that goes to research, that may help cure MS someday, and to help families who are struggling with Multiple Sclerosis today.

The past ten years has been a rollercoaster of ups and downs, and there are bound to be more of them. Someone once asked me, “If you could change it, would you?” Without even thinking about it, I said “no.” I still think about it off and on, but every time I do, my answer is still no. I may wish it never happened to my mom, because watching a parent hurting is no easy task, but I would never want to change it because of how it affected me. I feel like I am a better person because of it. I feel as though I am more responsible because of it. It has opened my heart and my life to so many new opportunities.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

View Comments (13)
  • cincey
    6 years ago

    I also wonder about the effects of my MS on my children who were 12 and 14 when I fell ill with a tumefactive lesion that changed my abilities and life overnight. From July 07 to Oct. 07 their great0grandmother died, their father had an affair effectively ending our marriage and I was hit by a huge relapse of this disease I hadn’t known I had previously. I tried to educate, keep life the same but I couldn’t….now 19 and 21 my son lives in stress and my daughter has always pretended this was not real and picks other people to be her mother and denies her family….. Every so often they will face what happened but counseling, education, patience and all my love only helped so much…..I just keep trying to love them as best I can.

  • Carol Norris author
    6 years ago

    Dear Cincey,
    I am so sorry for what this disease has done to you and your family! It breaks my heart to see families suffer like this. One thing that I constantly notice is how people respond and react to this disease. Our girls have been wonderful but they both have and still do respond quite differently. My Husband is amazing but it’s taken time, love, and patience to get where we are today. It makes living with this disease so much more difficult when our friends and loved ones do not remain faithful, loving, and caring in how they deal with this disease. It does take work, but those who live with the devastating effects of MS needs the love, care, patience, and faithfulness of all of their family members, friends, and relatives. I thank you for loving them as best as you can! Don’t give up ok! My love and prayers are with you. Do your best each day to try to remain as positive as possible. And, Do your best each and every day to care for yourself too. Hopefully, one day soon, your daughter will accept this disease and love you unconditionally. And, hopefully things will improve for your son as well. Thank you for sharing your story. Carol

  • Carol Norris author
    6 years ago

    I have a question that I could use some insight on. Last Summer and Fall I spent approximately 2+ hours per day, 4 to 5 days per week being outdoors. On the days that were hot I’d go outdoors during the cooler part of the day. I live in a Northern U.S. Climate. The Winter’s are long and cold so I spend very little time outdoors. Throughout the Summer and Fall months I noticed that the warmth from the Sun made me feel better. I had less pain, less fatigue, and more energy. Now as Winter has gone on these symptoms have worsened. The last week or so we had a few nice days so I sat outdoors in the sunlight and just soaked in the warmth of the sun. My pain decreased on those days and the fatigue wasn’t as bad. So my question is: Does the UV Rays from the Sunlight help all MS Patients and is there a way to similate the UV Rays of the Sun in the Winter months? Do Tanning Booths help, do they affect the body the same as the UV Rays from the Sun? It’s not just heat that helps because when I’m really hurting I’ve used Heat Pads and it’s somewhat helpful but still not the same. Could someone please give me some input on this? Thank you!

  • Lisa Emrich moderator
    6 years ago

    Carol,
    There can be great benefit to moderate sun exposure, vitamin D being one of them. I know that there are light boxes which are used to treat seasonal depression. I wonder if there are special lights which could simulate the sunlight you crave.

    An article on the Harvard Health website emphasizes that the UVA radiation in tanning beds is 3x stronger than that in sunlight (http://www.health.harvard.edu/newsletters/Harvard_Womens_Health_Watch/2009/September/is-a-tanning-bed-safer-than-sunlight).

    Whether you get the light from the sun or artificial lights, I’d think you should protect yourself from the harmful effects of the sun (light).

    You have put forth an interesting question though. I hope that others chime in. Also, you can always go to the forum section of the website and place your question there.

    Lisa

  • Carol Norris author
    6 years ago

    Thank you Lisa! Someone else had also recommended using artificial lights/light boxes. I will definetly look into this!

  • Laura Kolaczkowski
    6 years ago

    Carol, I often think that it was fortunate I wasn’t diagnosed until my mid-50’s and my children were grown. Thank you for sharing your insight into what a child experiences with a parent with a chronic disease.

  • Carol Norris author
    6 years ago

    I agree. Many times people don’t take into consideration that effect that this disease has on the children in families who live with MS and there needs to be a greater awareness. It’s really hard on the children and on our spouses. And each child handles it differently. Our 2 children handle it very differently. And, just as I had to deal with their thoughts and feelings when they were young, I still need to have an awareness of how they feel and it’s still hard for them even though they are now grown. It’s going to be life-long for us. We were a very active family together and this change isn’t easy for them. So, we work on it together as a family. I am proud of who they are in spite of this disease and the struggles that go along with it. Thank you Laura!

  • CHUMS - Children's Hope for Understanding Multiple Sclerosis
    6 years ago

    Tina, we have very similar stories. My dad had MS for 27 years and my parents told me when I was 7 years old. My dad died at the age of 50 (I was just 22) from MS (it actually says that on his death certificate). Three months later, in July of 1993, I started CHUMS – Children’s Hope for Understanding Multiple Sclerosis – a non-profit organization to help kids and families better cope with MS together.

    Today, I partner with the MS Association of America to conduct CHUMS conferences all over the country for kids growing up in the same situation we have. The conferences are hands-on, fun, interactive exercises and give kids a fundamental understanding about MS. Conferences also give families a platform to either begin or continue the conversation about MS in a very positive, productive way.

    We have six conferences lined up this year and CHUMS was just featured at the American Academy of Neurology’s Brain Health Fair in San Diego.

    I invite you, your mom, Carol, and anyone on this blog to visit the CHUMS website at http://www.chumsweb.org for more information.

    Sue

  • Carol Norris author
    6 years ago

    Sue, thank you so much for sharing! Thank you for the courage and compassion you have to start this organization and reach out to those who need support. We are so touched by your sharing and your courage. We will definetly visit your website. Thank you again!!

  • Laura Kolaczkowski
    6 years ago

    Sue, thanks for sharing that link. I’ll definitely look into CHUMS because the effect of our MS on children in the family seems to be an after thought. -Laura

  • Carol Norris author
    6 years ago

    Laura, I agree with you. I think many times people don’t take into consideration that effect that this disease has on the children in families who live with MS. There needs to be a greater awareness. Thanks for sharing your insight.

  • Joybo
    6 years ago

    I have always wondered what effect if any my diagnosis had on my daughter who was only 5 yrs old at the time. I had a relatively benign course of RRMS until recently (30 years later I became disabled after severe exacerbation.)
    We never discussed it; she had local, doting grandparents who were available to help me and to babysit her. I had household help (ah the good old days) so didn’t need to get her involved.
    I’m sure she ‘remembers’ my temporary periods of being bed-ridden. But your blog of today reminds me to ask her (now age 37, with a child of her own), what kind of feelings she had about “mom’s” illness over the years.
    Thanks for an excellent piece.

  • Carol Norris author
    6 years ago

    I thank you for your comments and sharing. Joybo, I am interested to hear what kind of feelings your daughter has about your illness. I’ve never talked with or met anyone with a situation similar to yours. 5 years old is so young. I hope you will continue to share your story. I was diagnosed 10 years ago but over the last 2 years after 2 severe relapses/exacerbations I have become much more limited. I’m very thankful that our children are grown now. I can’t imagine how difficult it would be to have young children and be so disabled from the MS. Thanks again!

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