Celiac Disease / Uncategorized

This Was My Mom


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I started writing this last week, and have had trouble finishing. I know it’s just a blog post, but this is hard, you guys. XO, GIMB

I’m starting to feel the effects of the Xanax I popped as I sit by my mom’s side in her very calm, warm, peaceful room at hospice. Which is why I can write/type/whatever it is I’m doing right now. This was not my first choice of activities in 2015, but here I am. And here she is. And there she goes.

I’ve written here before about my mom more than once. Her unexplained decline, my “a-ha” moment of gluten ataxia, and how her brain damage has progressed to a depressing, and now deadly, point. So I feel I should finish the story and let you all know the ending. I guess you know the ending, actually, since it’s everyone’s ending.

The day before New Year’s Eve my mom fell. This wasn’t the first time given her diminished coordination, vision weirdness, and overall weakening. But it was the worst time, and she broke her hip. We all know how the broken hip is an arbiter of nothing good, and well, sure enough nothing good came of that. On New Year’s Eve my mother had surgery on her hip. The actual hip part of the surgery went very well, but the rest of my mother began to slip.

First she could talk, but was not making a lot of sense. Just a few sentences here and there. Then she became incomprehensible. Then she stopped talking altogether.

My mother made her wishes clear a long time ago. She did not want to live a diminished life. As an intellectual, an English teacher, photographer, lover of nature and literature, my mom’s brain was on full-speed, all the time. All of that changed about 9 years ago, give or take. I hate that I wasn’t able to allow her that one wish—not to live like she has been for several years now. But she isn’t any longer.

My mom passed away very peacefully on Monday, January 12th around 8:30 in the morning. I don’t think it’s something I’ll ever get over, but there is the relief in knowing she did, finally, get what she wanted.

I’m not sure how to honor her memory other than to let you all know what an amazing woman she was. She inspired so many students, including this one. Yes, my mother was my English teacher which was not at all awkward in high school. Ahem. Still, because of her I developed a voracious appetite for literature, politics, debate, art, and continuous learning. She introduced me to one of my favorite authors in high school by handing me Margaret Atwood’s The Handmaid’s Tale. She inspired me to change careers when she launched a new one herself, upon retiring. She taught me so many things, at so many different times. Her fate was supremely unfair (and I can hear her saying, “Life isn’t fair, darling” as I type.)

I will miss my mom, and have been missing her for years now, every single day. Please read a great book, think of my mother, and take care of yourselves.

25 thoughts on “This Was My Mom

  1. I am so sorry for your loss, both for your mom’s decline and final passing. I lost my mother last year and even though the pain has lessened, I miss her still.

  2. I am so sorry that you had to experience this. It was a long tough journey that you and your mother were on, and it must have been a comfort to her to have you with her, although very difficult for you both. Gluten ataxia is such a horrible disease, especially because only a small portion of the medical community actually believe that it exists, which makes it even more frustrating. Of course we all know from experience that a large number of doctors wouldn’t be able to diagnose celiac disease unless it bit them on the ass; even then they would want more tests and three other opinions. This post really resonated with me: especially the part about her intelligence and zest for life, and how it disappeared. I can truly relate to that. My husband was one of the most clever, amusing, active people I have ever known. Three years ago he had a hemorrhagic stroke, and aside from short term memory problems, he was still much the same as always, albeit a bit forgetful, and not as fast as he used to be. He was pretty much still himself for the first year, and then slowly he retreated into someone I don’t know. I can’t really have conversations with him any more. Last year he was diagnosed with dementia, which made everything a lot worse. I figured this was enough grief for us to handle, but a routine blood test just turned up that he is pre-diabetic, despite the fact that we are doing everything right diet wise: low carb, gluten free. There are times that doing everything right still isn’t enough. Sometimes it just feels like the deck of life is stacked against us, doesn’t it? Although my husband is still an adult for the most part, there are days when he is older and sadder than Methusalah, and other days where he acts much like a very nice ten year old boy. This is in no way comparing our situations, because they are both very different, but I wanted to thank you for taking the time to post this. It must have been extraordinarily difficult, but it helped me with my situation. It helped just to know that someone else knows exactly what it is like when someone very smart, active, and savvy, suddenly isn’t. I know it won’t be better for a long time, and that your emotions will be in free fall, but you helped me and probably many more people than you will ever know. Thank you for sharing an incredible story. Your courage and determination are incredible, and Imadmire you greatly. I wish I were as brave as you. I believe from reading various message boards that I also have gluten ataxia, although not as badly as your mother did. I was late onset for celiac, so the ataxia didn’t affect me as badly. Maybe. I try not to think about it too much, and I usually don’t. I haven’t fallen for a long time, but my balance isn’t always the greatest. Every damned doctor I have gone to, tells me I am too young to have balance problems and refuses to look into it. Intelligence is wasted on the medical community. I think a witch doctor would be better than the ones I have wasted my time and money on.

  3. I am so sorry for your loss. A part of your Mom will always be with you. She lives on in everything you do. My heartfelt condolences.

  4. Your mom was my favorite teacher! She was tough yet soft. I knew she really cared about us. We all respected her. She will always be a good part of my high school memories.

  5. So sorry for your loss, April. Death sucks. Your mother sounds like a wonderful woman and it totally makes sense that you’re her daughter.

    Thanks for sharing with us. Your family is in my prayers.

  6. I am so so sorry for the loss of your mother this is very scary and thank you so much for sharing with us, I was just diagnosed with Celiac disease and this disease is so scary

  7. I was blessed to meet Ruth when I was working at the assisted living community in Austin, TX where she came to live. It didn’t take long before we became fast friends. She was only a couple of years older than I am and was bravely facing her future with a disability. I understood since as a child I had lived with the after effects of polio…now rearing it’s head in my later years as post polio sequalae. Ruth and I understood each other. Both strong and independent, but having to deal with our bodies not cooperating! We often debated who inspired each other more! I still say it was her. I came to love her sense of humor and realism as we talked about our kids and all aspects of our lives. I read her book and heard stories about her life with her husband on the farm. As her eyes failed I so enjoyed reading to her from books by one of her favorite authors, Wendell Berry. We laughed and cried together. I will always cherish the accidental friendship we discovered while reading April’s book to her. Sometimes you meet someone who has a strong impact on your life in a short time….this is what Ruth gave me. That and an autographed copy of her book and great memories of our times together reading, crying, laughing and praying. She was a remarkable woman and I will miss her.

  8. My mother was my English teacher as well. We are also great friends and I am so immensely grateful for her good health physically and mentally. Auto Immune diseases suck. My heart aches for you….have faith that she is better now.

  9. First, I will start off by saying I am so sorry. I know words can not fix the sadness that I am sure is overwhelming you. I know I can not say anything to make the pain go away, all I can send you is my deepest most honest love to you. I am not sure if you remember me, I was with The Celiac Disease Southern California Chapter (Community Advocate), and we met only a couple of times, but the short time we talked you were a person I knew I admired. Although our pain is not the same, please know I know your heartache. Three months ago today, my husband was killed by a drunk driver who left him on the road to die. He was the reason I survived my Celiac, he was a huge supporter of our cause, and even went Gluten Free to show me how much he loved me and cared about all of our struggle. Your mother sounds like the same type of person he was, and it is not fair that such good people have to get hurt, and not fair that we have to try to survive without them. It has been very hard for me to continue, but I promise today I will pick up a book again (I used to love to read) in honor of your beautiful mother. Sincerely, A Celiac Sister, Sandra Eagleson

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  11. Oh April, I’m just reading this now and my heart aches for you and your dear mom. I’m terribly, terribly sorry. This was a lovely loving tribute. She clearly will be very missed.
    -Dana

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