A Mother’s Perspective
Physical, Emotional and Relational Challenges
Looking back over these last years I realize that we have not only faced physical challenges with MS we have faced emotional and relational challenges.
Multiple Sclerosis is an unpredictable disease; it has a way of messing with your mind. You feel like you are on a roller coaster, it whips you around, brings you up a hill slowly, flings you down at a rapid pace leaving your stomach in knots feeling like you are going to get sick. At least for me as a parent that’s how I feel. Just when one symptom would get resolved a new one would pop up. So the remission of one symptom brings a relapse to a new one for Brandhi.
Emotionally, when one symptom would develop I would feel my mind racing: what if it gets worse, what if it stays the same, what if she never regains function of that area, what if . . . what if . . . ?
Relationally, we have learned who we can depend on. As I’ve said before you really find out who your true friends and support systems are. Now, I don’t feel that people just don’t care about us; perhaps they just don’t know what to do. It is still frustrating and hurtful, nonetheless. In the beginning we would call our friends and family and let them know that Brandhi was back in the hospital or on another IV steriod treatment but after awhile we learned that we would make all these phone calls and no one would follow-up with how Brandhi was feeling or stop by and visit so eventually we stopped informing people. We didn’t need the disappointment and Brandhi certainly didn’t deserve the hurt.
One occasion really stands out in my mind. One of the many times when Brandhi was admitted to the hospital one of our close relatives told us to expect to see them at the hospital during the weekend. Up to this point, she had been in the hospital for a few days and there had not been a single visitor stop by so Brandhi was really excited that this family member was coming. Visitors can really lift up your spirits when you’ve been cut off from the outside world and your only visitor is the nurse checking your vitals. Well, the weekend came and went and Felix decided to give that relative a call to find out if they were still coming. The answer was no. They were running around doing this and doing that, and they just didn’t have enough time. Brandhi was so deeply crushed. I got angry. My daughter had been through so much, how someone dare treat her that way, let alone a family member.
Now, I’m not saying that my daughter isn’t loved, she is. She is loved by many. But when you need support, an outward showing of support and no one is in sight it’s hurtful. We love our family and we feel they care but sometimes people can’t really understand how simple things like phone calls, cards and visits mean to someone with a chronic illness. I’ve learned to get over my anger towards people who have let us down because I realize that people are only human and God will send into our lives the people that He wants there for us.
This leads me to Brandhi’s Aunt Helen. Aunt Helen is not really Brandhi’s aunt by relation but she is definitely closer to her than any family member outside of me, her father and brother and my mom and dad. I call Brandhi’s Aunt Helen her mentor, for, you see, Helen has MS as well. When she met Brandhi she took her under her wing and showed her the way. She didn’t stop there. Aunt Helen has traveled with us as Brandhi goes around speaking; she helped Brandhi by tirelessly listening to her practice her speech. When Brandhi speaks Helen stands and claps the loudest with the proudest look about her. She opens her home and has helped Brandhi study for tests she is having in school. She sits and listens to Brandhi go on and on about boys, fashion, her hopes and dreams. She came over when Brandhi started a new MS medication and they took their injections together for a couple of weeks until Brandhi was ready to do it on her own. Believe me when I say two people never had so much fun taking injections than these two did those couple of weeks. When Brandhi has a really hard go of it, there is Aunt Helen bringing flowers and lunch to make her feel better. I could go on and on with all of these kinds of stories and how unselfishly Helen gives of herself, her time and her love for Brandhi. Before I leave this subject, let me tell you she is not only Brandhi’s Aunt Helen she has become my son’s Aunt Helen as well. My heart has so much love and adoration for this woman that I know that God sent her to my family, to me.
Now surrounded by an awesome support system I continue to educate myself about MS. I feel confident when I speak with doctors; because I have done all that I can to arm myself with knowledge. Therefore, as we make decisions about treatment, medication, and medical tests I know that I am informed and equipped.
I have chosen to educate myself in various ways: through the internet, medical books, foundations, medical community – doctors and nurses, people with MS, talking with family members affected by MS, experiences and observations from all of these various avenues.
After gearing up for the fight with obtaining knowledge I set out to educate others. I made it one of my missions to not allow people’s lack of knowledge and sometimes their lack of compassion and understanding affect us as deeply as I have in the past. There have been times during the course of our journey with MS that we have had to deal with educating the educators and to this point, we have been extremely fortunate to be in our present school system. For the most part, teachers and administrators have really gone out of their way to understand and accommodate Brandhi’s specific needs. There have been a few bumps in the road and a few people we have encountered who have absolutely no business in the area of dealing with kids.
You Look Good – You Must Feel Good
I’m sure you have heard the statement you can’t judge a book by its cover. If you are reading this and are living with a chronic illness you have certainly heard the statement, you look so good.
One of our biggest challenges in living with MS has been people’s lack of understanding that you don’t have to look bad to feel bad. Can you relate? One of Brandhi’s comments to people when they tell her that she looks good is usually, “yeah, I know I do but I don’t feel real good.” We’ve encountered situations on various occasions in which people can’t grasp the concept that just because you don’t look bad doesn’t mean that you feel good. This is one of the most frustrating situations that we deal with.
Brandhi was scheduled to do an interview once and she had just gotten out of the hospital so we weren’t really sure if she’d be able to make it. But she felt up to it and wanted to keep her commitment and do the interview. When we walked into the room and met the person who was conducting the interview they had a strange look on their face, I think they thought their big smile was masking this shocked look but we had seen it before so we weren’t fooled. The interviewer said, “Wow, you look so good. I wasn’t expecting you to look so good.” Brandhi responded by saying, “Would it make you feel better if I would have brought my IV stand along with me?” They laughed; it was all said in a lighthearted manner. This is just part of educating others about this disease.