When I look back on the time of my diagnosis with multiple sclerosis, I often think of the heroes that emerged in my life, shining greater and brighter than ever before – beacons of comfort and of strength that I clung to in the storm of this new unknown that was swirling about me. One of the lights that was the strongest for me during that time was my sister. She dropped everything and was with me in the hospital when I received the diagnosis of multiple sclerosis. She was the first one there, literally and figuratively, being ever supportive and strong, and just plain old amazing.
In those early days, she went to appointments with me and even took me to support group meetings. She was educating herself as much as I was, if not more, on what it meant to live with a chronic illness, and how she and our family could best support me. She was my lifeline – the strength and the voice of reason I needed when I felt so lost and hopeless and confused. I’ve always felt that I will never be able to give back to her what she had given to me during that time.
However, I’ve been thinking that perhaps she did receive something through that shared experience. I now feel that she was unknowingly preparing herself for an even greater challenge to come that would affect her immediate family. Of course, hindsight is always 20/20 and perhaps it is a coping mechanism that helps me to rationalize and to get through life, but I now believe there was a reason why my sister was going through my MS diagnosis with me.
Recently, my sister was confronted with a similar experience but in my opinion, on an even greater level. Her son was diagnosed with Crohn’s disease, a chronic bowel disease that causes inflammation of the intestinal tract. It is also an autoimmune disease and there is no cure. Crohn’s is something that my nephew is going to have to live with and to manage for the rest of his life. (Sound familiar?)
Although multiple sclerosis and Crohn’s are very different diseases, there are a lot of similarities. Both change the way one lives. You have to find your “new normal,” learn to listen to your body, and find strategies to cope and live the best possible life despite the chronic illness.
I can already see that my nephew is going to grow up faster than his peers which breaks my heart. However, I’m comforted with the fact that he is going to have an incredible perspective on life, as well as a strong sense of compassion and understanding. In fact, for his last birthday party he asked his guests to make a donation to the Crohn’s and Colitis Foundation rather than to give him gifts – what an amazingly mature and selfless thing to do!
My sister has confronted her son’s diagnosis with the same strength, and rational, calm thinking that she did when I was going through my diagnosis with MS. She is educating herself on the disease, and how to best support her son. She is working with the healthcare team to ensure the best possible care and treatment options, helping to find what works best for my nephew all while maintaining hope for the future.
My sister and her family have kept a sense of normalcy for my nephew, which we all know is extremely important. My nephew is not letting this chronic disease affect his way of life. It has not slowed him down one bit. He has continued to participate in all of the sports he loves: basketball, soccer, ice hockey – you name the sport and he is involved and playing it with extreme gusto and determination!
My sister is drawing on my experiences with MS and using me as an example for her son to show him that life indeed does go on. I can already see in my nephew that he has the desire to fight his illness by living the best possible life he can.
So even though I wouldn’t wish a chronic illness on anyone, if I can make it a little easier, a little less scary, then I will. I will gladly accept that role. In fact, it benefits me as I now have yet another motivating reason to keep going, stay as healthy as possible, and to maintain a positive attitude: my nephew.