By Katelyn O’Leary.
I’m dreaming. I know this because I’m small and sitting at a table too tall for me, watching as Mrs. DeBoni makes pasta for us all. Mr. DeBoni keeps reminding us that if we don’t finish our food, we won’t make it to “Dessert-Land.” I’m watching all of this, amazed, as my brain generates a dream with memories so clear and sharp. And just as Jacquie is about to reach over to give me dinner, I try to reach forward to touch her, hug her, and tell her how much I love her. But before I do any of those things, I wake up.
Jacquelyn, “Jacquie”, DeBoni, had, Multiple Sclerosis. MS is a devastating disease, in which the autoimmune system attacks the myelin sheaths of all of the body’s nerves. Eventually most of the nerves that allow you to walk, talk, or function in any way is taken from you forever. Jacquie had progressive MS but there are other types too. But Jacquie never felt sorry for herself and she never used a harsh word on anyone. Even before her diagnosis.
She was so beautiful. She was Italian, which is not a common ethnicity in Goshen, IN. She wasn’t shy, she wasn’t stuck up, and she was inclusive. As a little kid, I felt ugly and weird, and she would brush my hair out of my eyes and always tell me how beautiful I was. I could say a thousand things about Jacquie. How she always smelled like coffee and herbs. How she and her daughter (my best friend) Eva took me prom dress shopping. Her infectious, hysterical laugh over silly jokes or situations – I still remember.
As the years passed she started to decline. More than half of my life had consisted of visiting her and wishing for a cure or new treatments. But it did not matter how long I had been gone, I always made a point to see her. After years and years of Jacquie calling me her “other daughter” I started to believe it. And I still do. She helped me survive high school, a woman who couldn’t walk or feed herself but she would still remind me of all the good in the world.
I have CRPS. Another rare neurological disorder. When I developed this disorder two years ago, many compared it to Jacquie’s MS. For example, “Katie why can’t you be like Jacquie? She doesn’t complain or cry about her condition.” This is true. I don’t have an ounce of the self-determination Jacquie had. And Jacquie? She hugged me tight and told me it wasn’t my fault. Patricia Guidi, Jacquie’s mother (also known as Nonna) told me that I could be whatever I needed to be to deal with this illness. Their kindness moved me to tears.
Jacquie told me that eventually I would find someone who loved me the way I deserved. Whereas Mr. DeBoni has always told me that no guy will ever be good enough. They are my other parents. My other family. And Eva and I will forever be sisters. But that doesn’t mean that my grief is the same as hers. That wouldn’t be right. But I’m so happy I had 29 years with Jacquie. I’m grateful for all the times they made my childhood beautiful, my high school years tolerable, and my college days an adventure (she would ask me about boys, rugby, and how I was doing). Every major holiday I celebrated with my parents and the DeBoni’s.
I will never be like Jacquie. The pain that courses through me is so severe it demands submission. I was just recently hospitalized for my disorder – I vomit from pain and I was in real physical danger. I’m angry, sad, devastated, and sometimes all of these emotions come out in an explosion of rage.
“Why can’t you be like Jacquie?”
I will never be as good, selfless, and as wonderful as Jacquie. Even though she is gone, she has a beautiful family, an amazing husband, and wonderful parents. She was everything that was bright and beautiful in this world. And she fought with so much grit and good humor.
There aren’t enough words in the world to fully describe her last few months and weeks. How she suffered. How devoted her family and parents were, and how devoted her children were to her care and last days.
I went to visit Jacquie in June 2017. The visit was to spend time with her, since she was receiving hospice care at home. What I saw I will not describe to you. I cannot put into words how devastating it was to see her last few weeks on this earth. The visit was so difficult. Fun Fact about dying: no one really has a date set for death. They have no idea. So all the doctors and specialists and smart people give days or weeks or months. And so you must wait with your loved one, who can barely drink anything and struggles with talking.
On the last day of my visit, I went to her home to say goodbye. No one else was there, save for the hospice nurse and the CNA. I slowly walked up the stairs taking in all the family photos peppering the walls – photos I had seen a thousand times before. I felt myself getting more and more anxious as I reached the landing. And when I walked into her room, I immediately hugged her – I knew in my heart this was the last time I would see her.
I looked deeply into her eyes, trying to memorize every detail of her face. MS had not robbed her of her natural beauty – what could? Anyway, she was always more coherent in the mornings, the fevers she suffered from were worse at night. I told her I had to go back to California. And then the dam broke and I started sobbing. I kept saying how sorry I was. How I wish I could have done more. I wish I could have been home more. And I choked out the words, “You’ve always been my mom.”
And without hesitation, but with incredible effort (as the MS robbed her of most of her speech) she said, “I was always your mom.” I kissed her on the cheek and I hugged her tight. And even during the most painful time of her life, she still managed to make me feel so loved.
Jacquie and I both have/had neurological disorders. Both CRPS and MS are autoimmune, both devastating to our health, and both very difficult to understand. But she had the bigger battle to fight than me. She has 4 beautiful children (all adults now of course), a husband, and a family to take care of.
Remember her name and her disease. But also remember that your decency will be tested, so please support sites and programs that help N.O.R.D. (National organization of rare disorders) and share all the memories you have so her legacy can live on. I am providing a link to a site that raises money for MS research. If you choose to donate, would you donate in her name? Jacquie DeBoni.
I don’t care if it sounds cheesy, but Jacquie is my angel. Though our illnesses may differ, she always knew mine was real – when so many did not. There is no cure for MS or CRPS. But Jacquie always inspired me to keep going, despite the rough patches. Losing her was like losing a chunk of my heart. And I am grieving, but I know I’ll be ok. Because she is always watching. And for now, that is enough.
Please donate below in her name. And feel free to share in the comments if you do!
Katelyn O’Leary suffers from CRPS. She lives in Los Angeles, works in the entertainment industry. She is a frequent contributor to the National Pain Report.