5.10.08. My mom got sick when I was 14. I remember it very clearly. We were in Ocean City, NJ and my friend Kelly was with us. We were walking on the boardwalk one evening and my mom stopped and reached down for her leg. "Ouch!" she said. "What's wrong?" my dad asked. "I don't know, my leg hurts, it feels funny". "What's it feel like?" I wanted to know. "Like I pulled a muscle I guess. It's really stiff and it aches". So we walked slower, accomadating my mom's sudden discomfort. No one gave it a second thought. Afterall, we were on vacation, doing things we didn't normally do so she could have injured herself without knowing it during any of these activities. When we got back home though, her leg hadn't gotten any better. In fact, now her whole leg was feeling numb and tingley. She went to the doctor who referred her to a neurolgist because she'd also started having blurred vision. "It could be a lot of things, we don't know at this point," the doctor told her.
They tested her for Lyme Disease, Lupus and a myriad of other conditions. She had an MRI, CATscan, blood work and the dreadfully painful spinal tap. She knew M.S. was a possibility and though it wouldn't be a pleasant diagnosis, it wasn't the worse thing they could tell her she had. "I'm going to be okay" she insisted to me wiping away my tears. "I know in my heart that God is going to take care of me and I'm going to be fine".
The tests revealed that she did have Multiple Sclerosis, unpredictable disease of the central nervous system, which can range from relatively benign to somewhat disabling to devastating, as communication between the brain and other parts of the body is disrupted. My mom put up a brave front but I know she was scared. When she came home with the news, I only wanted to hear one thing - that she didn't have a disease - something you couldn't make better. They had to be able to cure it because I needed her. She was my mom, my superhero and there was no way I could survive without her. She looked at me with honest eyes and said "Yes, I have it". I screamed out in terror and though she tried to hug me and comfort me, I tore up the stairs and locked myself in my room, a shrieking 'NOOOOOOOOOOO' echoing throughout the hallway. The walls were closing in on me and I felt like there was not a drop of hope left in the world.
My mom resolved to stay healthy and take care of herself. She was already an extremely active woman, she'd take two walks a day in any kind of weather, always ate healthy and liked to bike ride, dance and play tennis. Her condition however, worsened. By the fall, the numbness had moved to both legs and she needed crutches to help her walk. In a matter of a few months she had to rely on a wheelchair. But she remained confident and optimistic that this was just an 'attack' as they are called and that she would walk again.
A lot of adjustments had to be made to our home and in our lives. As I was just entering high school and coming out of an extremely akward period of adolscence, I started rebelling against my parents as most teenagers do but it wasn't helping our family situation. I became moody and withdrawn and shut my parents out. I was embarrssed and angry. I didn't want to bring friends over and have them see what was going on and I felt resentful because of this. I didn't know how to deal with anything I was feeling. My mom really needed me and I couldn't be there for her. I was growing up but I wasn't ready to be grown up.
My dad was a rock. He never showed an ounce of emotion for what was going on which I still cannot understand. But physically, he was there for her helping in every way he could. He took her to chiropracters, herbalists, miracle healers, anyone under the sun they thought to try after the regular doctors said there was little that could be done. My mom tried many of the traditional drug therapies but only experienced negative side effects and none had brought her any relief. For those who have M.S., most people have what's referred to as relapsing/remitting M.S. which means they will suffer temporarily from the symptoms but then they recover and may not experience anything again for a long time. These people go on to live pretty normal lives. Surely my mom couldn't be among the smallest percentage of people whose M.S. only gets progressively worse. It wasn't fair.
Thirteen years later, my mom has never again walked or experienced any kind of remission. She says she cannot feel her feet at all and her legs are constantly tingley like pins and needles, the kind you feel when a body part falls asleep but she describes it as 1000x worse. Her ankles are always swollen and her whole body feels stiff and foreign. She's slowly losing her ability to write and her hands shake when she holds things. It's a struggle for her to type an email but she'll still try. She has to depend on my dad for everything, even the most personal functions which I'm sure is unimaginablably hard for both of them. She's gained a lot of weight because she cannot get any exercise and she has a terrible time sleeping most nights. Her routine is exactly the same day in and day out and she has little to look forward to. She longs to be connected to people but very few people make an effort to visit her. I know my mom feels very lonely. But if you talk to her on the phone her voice is cheerful and upbeat and you would never know anything is amiss. She still eats healthy, has an unbending faith and a loving spirit.
It's difficult for me to be around her though because I can see the sadness in her eyes as she vicariously lives through others. She always says she eats her heart out when she sees someone taking a walk out the window or if we are down the shore and she sees people wading out in the ocean. She loved the beach. It breaks my heart to know that her life ended at 50 - though she's still trapped here, forced to live as she describes - a burden to others. And the thing that haunts me everyday through and through is that I am helpless to do anything to fix her situation. I sometimes feel guilty when I try to enjoy my own life. I guess I should just feel lucky to still have her around but that doesn't feel right because I know she would rather have her suffering ended.
It's incredibly difficult to see the one person you love more than anything in life be in constant pain. I can't do anything for her even though she's done the world for me. I seldom talk about my mom to anyone because it is very painful. But when my heart is broken because I see what she has to go through, I want people to know what an amazing and strong person she is and how I feel soo lucky and proud to have had her as my mom. Ever since I was little, I wanted to be around her 24/7. She has always been my shining light. Sometimes I feel bitter when I hear my friends talk about going shopping with their moms, or having them come over and show them how to do things. I feel robbed for all the mother/daughter things we missed out on together. My dad tried his best to make up for it and he did a great job but it could never replace what I desired to have shared with her.
My mom taught me one of the most valuable lessons I've ever learned in life - to be positive and find the good in any situation because that is what she and my grandmother always did. My mom has understandably suffered some major bouts of depression from this disease. But she's showed me how amazing and resilant the human spirit is, because she presses on. And in doing so, I believe she brings great strength and encouragement to all those around her.
Mom, I love you.
