To My Daughter
How do you tell your child you have MS? How do you help them make sense of it all? I think about the day I’ll tell Pearl — in the not so distant future — and try to explain to her what MS is and how it has come to be a part of our lives.
I say OUR lives because MS truly is a family disease. It affects nearly every member of my family in its own way. Pearl is going to grow up knowing that I have a disease that will do everything in its power to stop me — mentally, physically, emotionally, and spiritually. But, it’s my job as a father to explain to her in the best/simplest way possible that it’s going to be OK — no matter what. I’ve gone over it in my head so many times, but I think the best way for me to tell Pearl is to tell her a story. She loves story time more than anything. I think it’ll go something like this...
So Pearl, imagine this… one day you wake up and your feet feel weird, or you see dark spots where no one else does. At first, you think nothing of it, but as the days go by the tingling and your sight get worse. You are talking to your friends and family about it, and after much hemming and hawing you go see a doctor.
Your doctor asks you lots of questions and decides that you need to see a special kind of doctor called a neurologist. The neurologist does lots of fancy tests on you, including one where you have to lay very, very still inside of a big loud machine for a whole hour! Then the neurologist asks you even more questions, some that are really strange, like…
- Have you had numbness here or there?
- Do you have problems going to the bathroom?
- Where does your family come from?
- Have you ever been bitten by a tick?
- Have you had problems with taste and smell?
After answering questions for what seems like forever, you have a test called a spinal tap. No, not the awesome movie about a band! This is a special test using a long needle that takes fluid from your back that gives the doctor more answers about what’s going on in the body.
The next day the doctor tells you something you really were not expecting. The test results have come back and show that you have Relapsing Remitting Multiple Sclerosis. Your jaw drops. And now — it’s your turn for the questions…
- Why me? I’m healthy.
- Why now? Everything is going so well in my life.
- What will my family and friends think?
- Oh no… am I gonna die?
- What is MS anyway? Don’t people die from that?
- Wait no… this means that I’m going to be in a wheelchair soon, right?
The doctor answers all your questions and calms you down. He tells you that scientists are learning more and more about MS every day. He gives you a list of things to do, like staying calm and not getting stressed out, eating healthy foods, exercising regularly, getting lots of rest, getting on a medicine that works for you — and most importantly, staying positive!
The next day, you start to feel a little sad. You cry with your family, but as time rolls on you realize that all is not lost. Life can, and will, be great. You start to meet people who have the same disease. You do tons of research. Some of it is crazy talk, but a lot of it is actually very helpful. You learn what MS really is — that it’s when your immune system goes a little haywire and attacks your own nerve endings.
But, the most important thing you learn is that the days you feel good are a true blessing. And, when you have those bad days — because, Pearl, I absolutely will — just remember that I will always be here for you. I will never give up on myself and succumb to the fear and depression, because life is still full of so many wonderful things that make the crappy days worthwhile! For me, that includes waking up every morning next to a beautiful woman (your mother) and an incredibly special little girl (you).
Pearl, I hope this helps you understand what my experience has been learning to live with MS and why I have chosen to adapt my attitude and behaviors, and live my life the way I do. You and your mother have been my greatest reasons for hope during these last few years. I have to be strong and endure what the disease throws at me because I want to take care of you for as long as I possibly can. To make that happen, I promise to always take good care of myself — I want to be around when you get married and have children of your own.
I often say that I don’t know what I would have done if I didn’t have you or your mother in my life. You make me so happy, and you have totally changed my outlook on my disease and my life!
My story webisodes
This online documentary series highlights Jack’s inspiring journey with relapsing-remitting MS — and how he doesn’t let it control his life!
Jack and others share personal reflections on life with RMS in the You Don’t Know Jack About MS® blog.
The resources on this page can help you prepare for visits with your doctor and better understand multiple sclerosis.