Rina is one in a million
I listen to a variety of MS teleconferences on Tuesday nights. I like to stay informed about areas science is exploring on my disease and with my responsibilities as a self-help group leader I think it’s important to understand what other people with MS find important as well. Keeping in mind that I’m special; Primary Progressive MS is less common than Relapsing Remitting MS and I really would like to understand more about RRMS too.
This week’s topic was telling kids and helping them understand that you have MS. From listening to the psychologist talk and then hearing the comments and questions from people on the teleconference after her it seems that telling young children is much easier than teens and young adults. I wasn’t surprised. Young children usually have unconditional love, faith and trust in the adults who care for them and will accept and deal with a situation much in the same way those adults will. If the adults are calm and positive with a drive to learn about the disease, the young children will handle an adult they love having it better and will learn at the level that’s right for their ability to understand. That’s not pshychobabble; I watched Tori and Rina adapt to my mom’s limitations with arterial sclerosis and rather than pulling away because they didn’t understand they were the 7 year olds getting the wheelchair at museums because they understood that Grams can’t do the walking in museums, but with the wheelchair we could all go together. Even thought my dad usually did the wheelchair pushing, the girls could help by getting the chair. By letting them do part of the caregiver responsibilities they accepted and learned what they can do to help. I’ve seen other young kids adapt in the same way. The kids that are with a parent who has MS at the family events I’ve been to are very much the like the girls were with their grandmother; they understand that parent’s limitations and it actually empowers them to feel like they can do something to help.
I will be honest that it broke my heart hearing so many people who commented their teen and young adult kids didn’t seem interested in learning or understanding about MS. There were also comments that that age group didn’t seem interested in helping in any capacity. I was in my late 20s when Mom was diagnosed but I’d like to believe that I was enough of the same person that had been my early 20s I still would have gone to medical classes with her to understand the disease. I do understand that the age, teens and early 20s, is a time when you’re pulling away from your relatives a little bit and establishing your own identity, adopting your own extended family through your network of friends, but I think when a parent tells you they haven’t incurable disease you might bring yourself mentally at home find out a little more about it and see if there’s anything you can do to help your parent.
I want to take the opportunity to give a MAJOR shout-out to Rina. She was the first one I thought of when I heard so many people talking about their young adult children who didn’t seem interested in helping or knowing any more about MS when their parent told the of their diagnosis. I just couldn’t understand some one’s own kids trying to distance themselves because my niece chose to do a final project for one of her college classes talking about MS, the different types of MS and how they affect people who have it. This project was to include a segment explaining why the topic was chosen and Rina included photographs of me in her PowerPoint slides to support why awareness and research of the disease is important to her. When she showed me her project I was in proud, loved and happy tears. After hearing the more common reaction in her age group to someone in your world having the disease it solidified what I thought anyway; she is truly an incredibly special young woman!