A little over three years ago, my whole world changed. My parents were separated, living in CT, while I️ was in DC, working at the American Psychological Association. I️ usually texted my family every day, and always heard from my mom every few days at least. One day I️ tried calling her, but no answer – it went straight to voicemail. I was worried, but I️ thought her phone must have died so I️ tried to call later. Voicemail again. I️ called the next day. No response. I️ became worried, anxious, and didn’t know what to do. I said I️ would wait one more day and sure enough, the next day, no answer. I️ panicked. I️ left my desk and started calling everyone in my family, but no one had heard from her for several days.
I️ asked my dad and my sister to go to mom’s apartment to check on her. I was worried about what they would find. Her door was unlocked, car in the driveway, but her computer was gone. She was missing. I️ almost lost it. Where was my mom and was she OK? I️ immediately thought the worst. Little did I️ know that just a few months later we would receive a diagnosis that, in my mind, is worse than I️ ever could have imagined. In the months leading up to my mom’s diagnosis, she was evicted, in the hospital, and finally ended up in a woman’s shelter. It was so sad to watch my mom bounce around from facility to facility with no where to call home. We knew she was sick, but no one had a clue what was wrong. Thankfully, after several weeks, a social worker at the woman’s shelter started asking the right questions, and they were finally able to determine a diagnosis that made sense, and she was able to get the appropriate care.
Three years ago, at the age of 59, my dear mom was diagnosed with Pick’s disease, an extremely rare form of frontal temporal dementia. Unlike other forms of dementia, Pick’s disease is different. You see, it attacks its victims at a very young age. My mom was only 59 when she was diagnosed, but in retrospect, it started several years earlier, perhaps even when I️ was in middle school, nearly 10 years ago. This form of dementia changes people. My mom, like me, was once a very emotional person. She was the most creative person I’ve ever known. She’s intelligent, brave, and always stood up for what is right. But now, I don’t know who she is. She has no emotional affect. Hardly a smile. No laughs. No tears. Just a blank demeanor. Each time I️ visit her I️ just pray that she remembers me. Who was this woman? Her eyes are lost. Is she in there? Can she hear me? Can she understand me?
Her body is shutting down. She has lost most of her vocabulary and her main means of communication is humming. It is without a doubt the saddest and most heartbreaking thing I’ve ever witnessed. There are so many things I️ wish I️ could tell her – so many things I️ wish I️ could say – and so many things I️ wish she could understand. How much I️ love her. How much I️ looked up to her. How much I️ miss her. How much I️ took her for granted. How much I️ wish, more than anything, I️ could hear her talk about her passions, her stories, her life. There are so many questions I️ didn’t get to ask. So many things I️ never knew. And now, there’s no hope.
Her life is trapped beneath her empty eyes, and all I️ can do is sit with her, and hug her, and hope that deep down, she knows that I’m right there with her. I️ hope she isn’t scared and I️ hope that she knows how much we love her. She was, she is, an amazing woman and I’m so glad I️ get to call her Mom. I cannot help but think of all things that we will never get to do together, and it makes me so sad. She won’t be there to help me pick out a wedding dress. She won’t be there, and I mean really be there, for my wedding. We will never be able to talk about parenting when I have kids. She will never get to babysit or give me advice. I will never be able to go to her when I need her. And this is so hard.
I miss her and all I want is to spend time with her, and I mean true quality time. This is SO tough. I️ think this would be tough for anyone. But for me, going through recovery from anorexia, it often feels impossible. Every time I️ went home to see my mom, I️ would relapse or slip or slide. I️ would stop eating because the pain in my heart was just too unbearable and I️ couldn’t cope with it. The only way I️ knew how to cope with the sadness and anger and hatred was through restricting. And it would send me down a spiral that could last days, weeks, even months.
But now, I’m in recovery. And I️ have to use every ounce of strength I️ have to stay in recovery, even while watching my mom drift away. I’m sure my mom always had a hunch that I️ had anorexia, but she never knew for certain. And sometimes I️ just wish she knew, so that she could be proud of hard I’m working to be better- to get better. And sometimes, I’m glad she never had to see the depths of my eating disorder because I️ cannot imagine the pain of a mother seeing her daughter starve herself.
But I️ just wish she could be proud of me. I️ wish she could tell me she loves me, no matter my weight, no matter my size. I️ wish she could tell me that she thinks I’m beautiful or that she thinks I’m hard-working, or that she thinks I’m brave. I️ so desperately wish to hear these words from her, but I️ know I️ never will. So I️ have to reach inside myself and remember all the wonderful memories I️ have of her. Every laugh. Every smile. Every story. I️ know deep down that she loves me. She told me a thousand times. But I️ took it for granted. I️ know she’s lost now, but I️ know that if she could, she would tell me everything I️ needed to hear. I’m not sure how many of you are in this situation – probably not many. But just know that if you are going through recovery while faced with heartbreaking situations, you are not alone. My friend recently told me that I️ have to chose recovery every minute, every hour, every day. No matter what obstacles come across my path, I️ have to stay strong and fight for my recovery. Every day is a new beginning. But you don’t need to wait for tomorrow to start over. Fight for your life because no one else can do it for you. Recovery is so worth it, and I️ hope that you can find the strength to recover, no matter what tries to stop you. And Mom, I️ love you. More than you will ever know.
About the Author: Lizzie Janniello is a Project HEAL treatment grant recipient. She graduated from Hillsdale College with a degree in Psychology in 2014. Lizzie lived in DC for several years, working at the American Psychological Association and a large research firm. She recently moved to Cleveland, OH and wants, more than anything, to help others recover from their eating disorders.