Home > Blogging, Family, Love > No longer afraid

No longer afraid

Something enraged me last month.

This story isn’t about that something. It’s about what happened afterward.

I told my husband I was enraged. He didn’t get why, saying multiple variations of, “It seems reasonable to me.”

I was floored. “Understanding this is so intrinsic to understanding who I am, if you don’t understand what’s wrong with this, you don’t understand me!”

I sometimes forget he wasn’t there for my mother’s full descent into schizophrenia. He is so intrinsic to my now, I feel like he’s been part of my every now. History says otherwise: He was there only for the very end, and then mostly from a distance.

His not knowing felt like a betrayal at first: How could he not know?! How dare he not know?!

Fuming to myself later, it struck me that the key culprit in his not-knowing was my not-saying. I’d collapsed decades of struggle and heartache into single-sentence statements: “It was like running the penultimate mile of a marathon over and over and over again.” I’d somehow expected him to extract details from my broad strokes, despite his never having run a marathon before.

If I hoped for him to understand, I’d have to share the details.

But sharing the details meant revisiting them.

I didn’t want that.

I never wanted to return there. To then.

One minute before I took this picture, I stood with my hand on my mom's doorknob and wondered,

Hello, goodbye

Shortly after my mom died, I aggregated everything I’d written about her–outside mail–into a single 90,000-word document. I transcribed without taking real note; I was still too raw with grief to mark the words in my heart or head as my hands flew over my keyboard.

Back in now, I thought about that lengthy document as I considered my quandary. I wanted my husband to know what it was like to be there–not here, remembering–but I didn’t want to do the work prerequisite.

I decided that if I was strong enough to live it in full, I was strong enough to revisit it in sum.

I decided, too, that there might be benefits to sharing the story as more than a synopsis with an audience wider than my husband.

But, really, mainly, I compiled my series of posts about then for him.

I was afraid. My hands shook, I couldn’t sleep, and an entire tree of tangled roots and terror filled my belly.

Still, I didn’t recognize anything I felt as fear until later.

Until I’d posted the final piece in my series and felt the lightness of no longer being burdened by it.

That same evening

Mom, but not

As I watched my mom devolve into untreated schizophrenia, I wondered in horror if I was looking at my future self. There’s a genetic component to mental illness, and I knew my genes were overflowing with the currently dormant codes for probably every mental illness that ever was, is, or will be.

I felt the hopelessness of being utterly unable to help my mom.

I could not save her.

I. could. not. save. her.

I encoded this message wrong, so that I remembered the erroneously coded message whenever I thought of my mom.

I didn’t think: I couldn’t save my mom from mental illness.

I thought: There is no salvation from mental illness.

I might never have understood my coding error had I not revisited then through eyes of now.

Through eyes that have since read thousands of blogs and seen that there are as many ways to experience–and cope, and grow with–a thing as there are people who live it.

Through eyes equipped to see not only my mom’s suffering through those hard years, but also her children’s loving tenacity.

When I began my journey through the past a couple weeks ago, I did so on unsteady feet. I felt as if I was simultaneously looking into the past and the future: not only my mom’s descent, but my own slow, inevitable downfall to schizophrenia.

By the time I posted “The End,” I was free.

I was no longer afraid.

If I become ill, my journey will not be my mom’s.

I don’t know what it will be, if it will even be.

What I do know is that I’m surrounded by people whose love is matched by persistence: by siblings who loved our mom through it all and who would love me no less for any illness I endured. By a husband who would have walked that old road with me had our paths converged earlier, and who has chosen to walk the road ahead with me knowing–and accepting–that some versions of what-lies-ahead are less kind to me than others.

My mom refused treatment for many reasons. I can’t know what treatments I might or might not try, or what might or might not work should I ever receive a diagnosis like schizophrenia.

Should it come to that, I will try, as I have since seen many bloggers do. I will try, and do so enveloped in both love and understanding. The rest is unforeseeable, but that–that is foreseeable, and certain no matter which version of what-lies-ahead comes to pass.

In the warmth of that certainty, I find I am no longer afraid of things that might yet be, or much concerned with them at all.

I find I am no longer afraid of schizophrenia, or the future.

What began with rage ended in awe:

I am no longer afraid.

pv5l

Note, fear of mental illness was never fear of the people who live it.
It was fear of the illness itself, and what it could do to me:
what I’d seen it do to my mom.

Also, soon after rejoicing my newfound freedom,
I found this article and rejoiced again.
Many outcomes are possible!

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  1. September 22, 2015 at 9:20 pm

    Sitting here grinning, and so very happy for you. Isn’t it great when we send out a message in a bottle, and it comes right back to us?

    • September 23, 2015 at 5:16 am

      It really is! I can’t remember the last time I experienced this, if I have, but I hope it won’t stand alone. 🙂

  2. September 22, 2015 at 9:24 pm

    Everything you write is so inspiring and honest. You are such a beautiful human being 🙂

    • September 23, 2015 at 5:19 am

      I fell asleep on the couch, what with a tiny human being starfished across my half of the bed, and clearly read these words sometime during the night … but I’m really reading them now, and glad to start the day with them. Thank you so much for your kind words.

  3. September 22, 2015 at 9:53 pm

    Since I have no other words right now, I’ll just say, you are amazing, you are loved.

    • September 23, 2015 at 5:19 am

      Those are some perfect words to read while groggy and preparing for the day ahead. Thank you. (And ditto.)

  4. September 22, 2015 at 9:59 pm

    To release fear is to give ourselves the right to live again.
    Very well done.

    • September 23, 2015 at 5:21 am

      Yes! I remember a few times realizing I like my choices borne of love better than those borne of fear. I wish it were easier to, say, sit down in a one-hour block and identify all fear-based choices still in my life and change them, but in this world … I have to take them one at a time as fate, luck or chance lead me to them. 🙂

      • September 23, 2015 at 6:05 am

        If you wish to do take the fight against the fear and think about this, then the different kind of fear will come up in your mind, one by one, then also better to handle, so you don’t take too much in one time. It takes time, but that is okay, just you feel, that you get closer to your goal.

  5. September 22, 2015 at 10:10 pm

    Ditto what has been said above – you are amazing, you are loved, and you perfect summarized my own fears. Even though my med student husband tells me that the disease would have manifested itself in me already by my mid-30s, I still harbor that terror. Not because I fear people with mental illnesses, because I am terrified that I would ever live in the terror I saw in mom’s eyes, reflected back out at me. That I would ever, as I heard when she whispered, her voice broken and raw, “I don’t know what’s real anymore.” Love you so much and am so happy you shared this!

    • September 22, 2015 at 10:12 pm

      Doh, my slow keyboard delays meant words were omitted in the above. I need to get a new keyboard. And, um, new eyeglasses, because these ones are out of date. *sigh*

    • September 23, 2015 at 5:27 am

      I’m so glad you shared this. I never heard her say words like “I don’t know what’s real anymore,” but, oh … I saw the terror, alternating with the rage come from setting aside the terror and accepting reflections of illness as truth.

      Littler just howled his wakefulness, so that’s my cue to step away from the keyboard. Before I go, one more thought: If, somehow, it did transpire, know you will be loved and cherished, the memory of you undoable and never to be undone, even in the very worst of cases … a worst of cases which needn’t be lived again, even with a diagnosis. There are kinder paths to walk from diagnosis, and I trust we would learn to walk those as we learned to walk this one.

      My life is so greatly illuminated by my siblings’ light. I wish I could convey the feeling of this certainty of love instead of having to try revealing it with feeble words.

      I love you, BLS. K

  6. September 22, 2015 at 10:55 pm

    🙂

  7. September 23, 2015 at 1:20 am

    Another brave and honest post. It’s certainly going to help others who are feeling the same way and have similar worries too… Thanks so much for sharing!

    • September 23, 2015 at 1:23 pm

      I hope so! I hope someone out there who doesn’t have siblings (or similar support) reads this and feels the love all the same. Thank you for reading, and sharing your thoughts!

  8. September 23, 2015 at 2:34 am

    Happy dances.
    You gave us a gift, and it is truly lovely to hear that you received, with interest, the same gift.

    • September 23, 2015 at 1:25 pm

      It is such a joy. I also take it a reminder to answer my husband’s questions at greater length, instead of always trying to answer as succinctly as possible. Important details get lost in that succinctness, even if elaborating can be exhausting. (I’m seeing now how it is so much more than just exhausting.)

  9. September 23, 2015 at 2:35 am

    So happy for you! Good on you!!!

  10. September 23, 2015 at 2:58 am

    All these posts, and this one in particular, have really hit me, and ultimately inspired me. So, thank you. I hope you don’t mind me linking to this post.

    • September 23, 2015 at 1:27 pm

      In addition to not minding, I was delightes to awaken groggily and see your poem atop my reader. It set the tone for the rest of my day, and I’m gratefup. Thank you! (I’m glad you write all the poems you do, by the way. It’s more for me to eagerly await!)

  11. September 23, 2015 at 7:19 am

    How honest of you to reveal that deeply seated kernel of truth under all the very real feelings of love, pain and sympathy for your mom – what if it happens to me? This is such an understandable fear, yet I rejoice to hear you are decided; it will not shackle you.

    Four of my siblings have had cancer. One died of a brain tumor, two came through to the other end (so far – it’s early days) and one is still fighting. Underlying my love and pain for them is the thought, every time I have a headache, that it’s my turn now. I think…I hope..that this self-centered fear takes nothing away from my concern for them. I usually push it to the back of my mind, because what kind of life can it be if it’s constantly lived in fear?

    • September 23, 2015 at 1:29 pm

      Exactly what you said! Even with one loss to cancer, I have these moments where I cough one day too long or feel ragged and think, “Oh, no! This is it! The end!” I walk myself down from the ledge reminding myself how very sweet this moment is (and, indeed, most moments are). Fear is a terrible thief.

      • September 23, 2015 at 1:42 pm

        “Fear is a terrible thief.” Love that line.

  12. September 23, 2015 at 8:06 am

    I have been reading along in the series but haven’t been able to comment. I thought today was a good day to remind you that you are loved and thank you for sharing so much of you and her on here with us.

    • September 23, 2015 at 1:30 pm

      Thank you–for reading, for commenting, for sharing the love. I’m sending some of my own to you. ♡

  13. September 23, 2015 at 10:37 am

    Ahwz smiling here in holland and love the picture. Real big hug!

  14. September 23, 2015 at 11:32 am

    Love the journey you just went through! What a process, and I’m so glad you shared it with us!

  15. September 23, 2015 at 11:59 am

    Wow. What freedom.

  16. September 23, 2015 at 11:59 am

    You look soooo much like your Mom!!! 🙂 OK, Kiddo, you do realize that these posts are the “chapters” in your book, yes??? Beautifully written, Deborah…just beautiful!!! ❤

    • September 23, 2015 at 7:21 pm

      I definitely see an opportunity for an expansion, should the urge strike sometime down the road … such as the next time I hang out with my sisters!

      Thank you so much for your encouragement throughout. ❤

      • September 23, 2015 at 7:26 pm

        Good! And you’re very welcome! I hope some day you have the time, energy and desire to “go forward” with it. It’s a story that needs to “be heard”…..but whatever you decide, is “cool by me”…I’ll just keep reading (and appreciating) your posts! 🙂

  17. September 23, 2015 at 6:35 pm

    Inspiring, Deb, and look how high you can jump…I’m in awe of your strength and courage. I am grateful to call you my friend. And, I am thankful that you trusted us enough to share your story. Beautiful, friend.

    Love,
    E

    • September 23, 2015 at 7:22 pm

      Thank you, for your encouraging words here and elsewhere. They’ve eased my heart until now, and will surely do so for a long time to come. Much, much love.

  18. September 24, 2015 at 3:32 am

    I was waiting for you to get here, to this place, to this fear. I was waiting for you to arrive at this fear. I knew you would and I was hoping in my heart you would realize you are surrounded by so many who love you, who lift you up, who embrace you and support you, who would walk with you down any path no matter the monsters you might encounter that your path would not be the same path your mother had to walk.

    For any of us who carry genetic markers, whatever they might be, fear faced head on is hard. Sometimes we can stem the tide. Sometimes we can only wait and see. Being surrounded by love, that is often the best we can hope for. You have an ocean of love, you are the beach where waves lap constantly.

    • September 25, 2015 at 1:30 am

      It seems funny now, only a few days later, that I should ever have seen only/mostly the fear, when the love was–and is–so abundant.

      (I think, maybe, I also needed to see the love-now to see the love-then. I am so grateful for the loving, uplifting comments allowing me to see everything in such a different, much truer light.)

  19. September 24, 2015 at 7:44 am

    I am so glad that this is where you find yourself. It is wise to be vigilant, but not to be so afraid of what might be that it becomes inevitable– because it isn’t. Besides, times and attitudes have changed, and hopefully, will continue to change for the better.

    From what I know of schizophrenia, though, I think you’re ok. It tends to manifest earlier in life. My guess is that the signs and symptoms your mother had showed up years and years earlier.

    • September 25, 2015 at 1:44 am

      I’m excited to see how much they’ve changed and are changing! My “Grampa G” always thought my mom was mad at him. No matter how I explained it, he couldn’t understand that wasn’t so. I think–based on everything I’ve seen since–that will be less and less often the case over time. That’s a heartening thought.

      The signs were definitely there. I downplayed them in my memories of the time, but they were there from at least the time I was twelve or thirteen. I didn’t see them at the time; it was honestly only over the past few weeks (which seem like a hundred years, in terms of understanding) that I saw how clearly they were there.

      My godmother actually emailed me after reading one of the posts. She was concerned about how something she’d said at the time might’ve added more stress. I wrote a long letter back saying that was probably the only not-glowing reference to her in my hundreds of thousands of words throughout my journals. I searched my journals for reference to her name and found a conversation I’d forgotten we had in July 2003. I might ask her if she minds my posting it, but for now, here’s an illuminating paragraph:

      Anna said, “She was never the same after California. Just never the same.” My mom talks about everything (or did, before that blow-up almost two weeks ago, which Anna seems to think is the final one in my mom’s mind), literally everything – even things Anna has no interest in knowing – with Anna, but she never, ever spoke of California. That remains something my mom carries with her, and carries alone since in my dad’s mind he has never done anything wrong… ever (the gift of pathological liars – they even convince themselves).

      If California was when my mom began showing signs, that means she was evidencing them as early as ’83 and ’84. Mom would’ve been in her late 20s then.

  20. September 24, 2015 at 8:18 am

    I share a similar fear of Alzheimer’s Disease. I think the only thing to do is live each day celebrating the love we have had in the past, present, and future. I am proud of you for working through this and coming out stronger and more determined to live, love, and inspire. Just knowing you are not alone is enough to carry you.

    • September 25, 2015 at 1:46 am

      One of my work friends has talked about his own fear of Alzheimer’s, a fear he tempers with a very clear plan should he be diagnosed.

      For me, from here, the love and not-aloneness is everything. ♥

  21. September 24, 2015 at 6:01 pm

    “I didn’t think: I couldn’t save my mom from mental illness.
    I thought: There is no salvation from mental illness.”

    Seeing the two — and realizing you had confused them — is such an amazingly valuable lesson to have learned. And not the kind of clarity that is easy to come by, for most people contemplating such fraught relationships.

    ❤ ❤ ❤

    • September 25, 2015 at 2:06 am

      I was so grumpy for about a day after The (In Retrospect, No Longer) Enraging Thing, but now I’m glad for how it inspired me to open up so many windows and doors: for inspection, for reflection, and most of all, to let the light in.

  22. September 24, 2015 at 11:52 pm

    Thank you for writing this. It made me think about how my fear over my daughters behavioral issues increased tremendously after her half brothers schizophrenia diagnosis. His path does not have to be hers and likely won’t but it is always in the back of my mind.

    • September 25, 2015 at 2:14 am

      “His path does not have to be hers”–so very true, but a truth easier to understand in some ways than others. Reading these words now, I can’t help but translate them to my own experience (“her path does not have to be mine”) and be comforted by the powerful truth in that handful of words. What’s ahead is ahead and can and will be addressed with all the resources we have then; for now, I tell myself, there’s enough to worry about and celebrate within this very moment.

      (I am so, so glad to see you here on WordPress!)

  23. September 26, 2015 at 10:27 am

    Powerful! I so relate to what you wrote here and what you’ve written about your mother in other posts; the love, and horror (maybe not the right word), and that bone-chilling fear. I have experienced those, as well, as I’ve tried to come to grips w/the past- tried not to let it interfere with the NOW, and contemplated what the future holds for me, because of
    genetics. I recognize that I, too, am blessed with a great support system – come what may. 🙂 Thanks for sharing.

  24. September 26, 2015 at 11:44 pm

    It is scary. I think there is huge stigma with mental illness. There are many options now that were not always available before. I applaud your bravery and the decision to share with you strongest ally. 🙂

  25. November 20, 2015 at 8:09 am

    I feel so proud of Deborah, for having the patience and stamina to come to this realization. Many don’t try to understand, give up and give in to resentment and bitterness. You are definitely an inspiration to me, for things I’d prefer not to discuss in a public space. With the community you have built, there will be more people by your side than you can imagine!

  1. September 27, 2015 at 8:05 pm
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  6. May 12, 2016 at 12:02 pm
  7. July 16, 2016 at 6:30 pm
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