Home > Family, Health, Personal > Six Hands for Lifting: On my mom, mental illness, fear and hope

Six Hands for Lifting: On my mom, mental illness, fear and hope

Almost three years ago, I wrote about losing my mom to mental illness. I did so with shaking hands in hopes my words would be healing to those struggling with mental illness and illuminating to others.

The post was one of my most popular. It was also one of my most deleted. I thought of reposting it again someday so it would again be accessible here, but wasn’t sure when or why.

Yesterday I read “Dear Ms. Miller,” a thoughtful, articulate response to a blame-assigning statement by Washington Times editor Emily Miller. Whereas my response to the statement–indicative of lack of experience trying to obtain help for a mentally ill loved one–was to glower at my screen, blogger MJ channeled her experiences into a thoughtful, detailed assessment of the many difficulties actually obtaining treatment.

I hope you’ll read “Dear Ms. Miller,” and read my post below if you haven’t already.

I continue to wish peace for all who suffer, and compassion from those who do not.

SIX HANDS FOR LIFTING: ON MY MOM, MENTAL ILLNESS, FEAR AND HOPE
Originally posted June 8, 2011

Eight years ago, I had a conversation so excruciating, mere memory of it causes me to tremble as I perch at rusty floodgates barely holding back a billion more tears.

Eight years ago, my sister, brother-and-law and I sat on my mom’s front porch and urged her to consider voluntary psychiatric commitment.

When I envisioned the summer of 2003, I thought about the joy of being free from law school for three whole months. I imagined all the adventures I’d have with my siblings. Best of all, I pictured the lovely bride my just-younger sister would make on her wedding day.

What I absolutely did not picture as I boarded the Greyhound bus to Oregon was spending a summer watching my mom’s long-time “colorfulness” devolve into full-blown mental illness. I didn’t expect I’d spend many awkward hours listening to her talk about how her neighbors were poisoning her, Conan O’Brien was doing experiments on her, or how her children were “in on it” with the University of Oregon and the Cheshire Cat.

A thousand times over that summer, I found myself wanting to call my mom and seek her support. A thousand times over, I felt my heart torn into millions of imperceptible fragments, realizing not only that I couldn’t call my mom for comfort . . . but that I couldn’t even find her. I could look into a face that resembled hers in physical structure, but I could see none of the light or humor that defined my mom outside the colorful moments I realized far too late were more than just eccentricity.

Before August 7, 2003, my siblings and I pursued involuntary commitment. The caseworker handling our case determined not only that my mom was neither an imminent threat to herself or others (a requirement for involuntary commitment) but also that, since she seemed reasonably lucid when he visited her, we were probably just trying to get her out of her house so we could get our money-grubbing hands on it.

The caseworker wasn’t swayed by our godmother’s involvement. Perhaps he figured we’d just agreed to give her a cut of the proceeds on house. That’s not for me to know. What I do know is that an already endlessly discouraging, heart-wrenching situation was thus made worse.

Where on earth were we supposed to go for solutions or support?

Urging our mom to consider voluntary commitment was our next step. On August 7, 2003, Rache, Nick and I began a conversation for which our hopes greatly exceeded our expectations.

I wrote about that conversation the next day:

Yesterday was a tough day. Rache, Nick and I were probably more nervous than we’ve ever been in our entire lives. We’ve all dealt with pre-test nerves, with performance nerves, with all the kinds of nervous moments you encounter in the course of life, but this was something new. What are you supposed to say to someone in this situation, especially your mom? “Yeah, we really don’t think you’re quite right…” She was running around the house trying to find things to hand us, sure her neighbors were going to take her out at any moment, before we got her to sit on the porch. Nick said we needed to talk, but then fell silent. None of us were quite sure what to say. So I eventually spoke. And she saw it all coming, every bit of it. “Other people know better what’s happening. They believe me and they support me. They know.” She kept saying harshly, “I understand your position, thank you. I know you mean well,” and in some respect I think she did, but I also think she knows what is happening and is deathly terrified of what is happening to her. (It is clear in everything she says, and does; but she also knows she can’t tell us, because then it’s really, unavoidably real.) As we walked away, she said, “Other people are helping, people who care more about me.” I turned against the sun and said, “It’s not possible for them to love you more than us, Mom…” before she shut the door. I know she heard, but I don’t know if she believed it.

As soon as the door closed, Rache and I burst into tears. (Nick commended me for being so composed, but though I can put on a show, I feel every bit of it.) I knew it wouldn’t be that easy, but I had hoped it might just be that magical, that she’d just get in the car and go with us. We’d hold her hands from either side and let her know we were there to support her through this.

Revisiting these moments is as soothing as going for a barefoot stroll on the sun. If there were no benefit to my doing so, I’d lock these memories inside a thousand nested, impenetrable boxes and never stray nearer than a couple solar systems away from them.

Something I read over the weekend jarred me into revisiting them. That “something” was the powerful author’s note following Sonya Sones’s Stop Pretending: What Happened When My Big Sister Went Crazy.

In her author’s note, Sones describes her sister’s struggle with mental illness. She talks about asking and receiving not only her sister’s blessing but her full support to write the book.

If you’ve never experienced mental illness, either that you suffer or that suffered by someone deeply beloved by you, you might be wondering why Sones’s sister took this approach. Isn’t mental illness a personal flaw to conceal?

In short, no.

Mental illness is exactly that: an illness. It’s a sickness that impacts the brain’s functioning.

Its core, then, is the same as illness of the kidney or heart. A specific biological sub-system isn’t operating optimally.

The expressions of mental illness can be deeply discomfiting to behold. These expressions vary based on the specific illness assailing the brain–depression, bipolar disorder, schizophrenia, etc.–but have in common their root in the brain.

Unlike many other illnesses, those who suffer mental illness often face not only the terror of knowing their body’s engine is malfunctioning . . . but also the fear of facing that illness alone. As one blogger recently shared, she was reprimanded for airing her dirty laundry when she tweeted exuberantly about a breakthrough she’d had in facing her depression.

Dirty laundry? Really? When I had tonsillitis, I didn’t feel I was airing my dirty laundry by saying as much on Facebook. I didn’t feel ashamed for my body’s inability to vanquish the virus before it could manifest itself. Yet, where mental illness is concerned, fears lurk and linger as if the Dark Ages concluded just yesterday.

It’s OK to be afraid. I’d be lying if I said I’m not afraid.

I am.

Every day, I look in the mirror and fear I’ll follow my mother’s steps to schizophrenia. It was hard enough to experience schizophrenia second-hand. How much harder would it be to face that in myself? My mom’s fear in rare moments where she revealed awareness of her own worsening illness felt–and continues to feel, in memory–like a sequence of powerful back kicks to my stomach.

Daily, I must remind myself not to let my actions be determined by fear. I can live my life in the shadow of that fear or I can do my best to embrace this moment, now, with gratitude for all its beauty. I can use the hardships I’ve experienced to remind others not to let themselves be defined by their own fears.

Mental illness isn’t contagious. By sparing a moment, a kind word, or an embrace with someone who is suffering, you may be a part of a changed world in which no one says these heartbreaking words:

I wish I had cancer, so people would talk to me about how scary this is.

Whether you’ve been coping with mental illness for decades or don’t know anyone who is openly struggling with mental illness, I urge you to read Sones’s Stop Pretending. No matter who you are or what your experiences have been, you will find poignant, heartbreaking insight into the many sorrows surrounding mental illness. You will also hopefully find yourself inspired to reach out to people who fear you’ll spurn them for their own illness, and to be a rock to them in hard times.

Please don’t let fear be the end of your journey toward understanding mental illness, or reaching out to those who would welcome your understanding. Challenge your fear. Conquer it with information.

Put the energy you’ve spent fearing or disdaining into loving. Embrace the many wonders in your daily life, and reach out your hand when you see someone needs it–whether they’re suffering from HIV, cancer, mental illness or the loss of a loved one. In doing so, you’ll be a part of creating a world in which people will spend less time worrying about being stigmatized and more time seeking–earlier and without fear–the help they need to shine with their full brilliance.

If you’re struggling with mental illness, please know that you are not weak. You are not alone. NAMI is a powerful starting point toward finding the support you need, whether you or a loved one are suffering.

Every day, I will say a prayer that you will find peace–in practical support, in medicine, in therapy, in love. As I do so, I will not be alone. For each of the countless people who have walked or continue to walk this painful road, there are two hands that would reach out to lift you were they only near enough to do so.

six hands for lifting

six hands for lifting

For more on how my mom’s story, please read “Hope, unbound.

love

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  1. March 13, 2014 at 1:12 pm

    This made me cry. I did not know that this was part of your history, and now I understand why you could write your beautiful post yesterday about not judging others. I can’t write much about this subject on my blog right now, but my soon-to-be-ex has increasing mental problems. As of now, they are undiagnosed.

    “Daily, I must remind myself not to let my actions be determined by fear. I can live my life in the shadow of that fear or I can do my best to embrace this moment, now, with gratitude for all its beauty. I can use the hardships I’ve experienced to remind others not to let themselves be defined by their own fears.”

    ^^^This is what you are doing. Thank you for it.

    • March 13, 2014 at 3:04 pm

      I did not know that this was part of your history
      I wrote about it frequently for a while, but found some peace through writing so that it became a less prominent part of my overall story. It was so strange to revisit the post this morning and remember the agony of writing it then; now the world I live in has been shaped by my opening up about all the sadness of losing my mom in this way–in time, with time.

      I learned so much by watching my mom’s experiences, and how others interacted with her. I wish I had learned more of it at the time, but so much had to be learned in retrospect.

      As I type all these words, it occurs to me I’m wandering away from the two things I really want to say:
      (1) Thank you so, so much for your affirming words.
      (2) I am so sorry for the hardships you touch on, and wish you well through the journey ahead. I wish it could be easier for you.

  2. akatpat
    March 13, 2014 at 1:13 pm

    I am so sorry for your loss. Great post.

    • March 13, 2014 at 3:06 pm

      Thank you. Time has brought some peace, as has support from some amazing people on and offline. 🙂

  3. MJ
    March 13, 2014 at 1:26 pm

    I am so profoundly moved by your story. Putting myself in your shoes, being the daughter of a mother with schizophrenia, I lose my words. My daughter has childhood-onset schizophrenia. Of the adults with schizophrenia, only 1% of those adults experience disease onset before 18. Of that 1%, only 1% of them experience onset before 13. Grace was 10. No one knew what to do–even the experts. But, even then, I was still the adult. I wasn’t dependent upon my daughter for my stability. So, to watch your mother experience this disease as well as to experience her fear and non-compliance as is so often the case with the combination of positive, negative, and cognitive symptoms…I can only sit and listen. I can only nod my head and say that I understand. The accusations that you faced from the case manager. The judgments. The harsh words. I feel exasperated reading it. I want to reach in and make it better somehow.

    My mother has a mental illness as well. It’s not schizophrenia, but she’s tried to commit suicide many times; and she has refused treatment for most of my life. It is, to say the least, a profound life experience.

    Anyway, thank you for sharing your story again. It’s so important. The more that people come together and say what is true with a united voice–even if it takes a long time, the more we change the collective consciousness about mental illness and chip away at the stigma, thus, freeing people up to step out of the darkness and get help.

    • March 13, 2014 at 3:16 pm

      Since I first posted this, it turns out my mom’s mental illness might not have been schizophrenia. That was the only diagnosis she shared with me, but she shared others with my siblings. They typically refer to it as bipolar disorder characterized by paranoia now, and I’ve taken to writing about the diagnosis in more ambiguous terms recently as a result.

      It once seemed strange that we should not even have a clear-cut diagnosis, but over the past few years, I’ve seen that this is not uncommon in such a broken (mental) health care system. From the outside, I can understand how easy it might seem to perceive a simpler world where one is diagnoses and readily treatable. From this side, I am saddened how difficult it is to obtain even a diagnosis, let alone assistance.

      I’m still floored by your ability to translate your difficult experiences into such compassionate, thoughtful reflection. I do believe that–versus, say, my initial response of glowering–is the key to change, and I hope sweeping assignments of blame are gradually replaced with understanding about the real world complexity of treating mental illness in the U.S. today. Thank you so much. I will be following your journey via your blog and wishing you the best in the interim.

      Also, have you heard of the book Crazy in America? It’s a heartbreaking read, but profoundly illuminating.

      • MJ
        March 13, 2014 at 6:09 pm

        Mood disorders and though disorders or psychotic disorders seem to be very difficult to diagnose for some clinicians. There is one key in differentiating between a mood disorder and something more schizotypal: What came first–the mood disorder or the psychosis? I can’t tell you how many psychiatrists have gone back and forth with my daughter over the past 2 1/2 years. It’s maddening. A proper diagnosis does indeed matter because, as you probably know, schizophrenia often has a progression including those cognitive and negative symptoms. Bipolar disorder with psychotic symptoms might present superficially like something schizoid, but it looks different in the brain. So, if someone experienced psychosis first, and then the mood issues like depression, cycling, or mania came after, then you’re looking at something like schizoaffective disorder. If a person was cycling first between mania and depression–a bipolar mood vs, a unipolar depression–and the psychosis came afterwards, then you’re looking at a mood disorder with psychotic features. I’ve actually had to walk psychiatrists through this! This is why I am such a strong proponent of self-advocacy. Really knowing what is going on because those trained experts are often not.

        In any case, I applaud your honesty and your contribution to the greater conversation of shared experience in this process. I know what it is not to be able to get the right diagnosis for someone you love. But telling the truth is courageous, and it models integrity. And your doing that blazes a trail that others can walk.

        I have not read that book. Thank you for recommending it. The title tells me that it will be…hard, but hard is good sometimes. Shalom to you…MJ

  4. March 13, 2014 at 1:31 pm

    I had to read this twice. Beautiful and touching piece, it’s very hard to watch a loved one go through mental illness. I am currently struggling with this as we speak. Maybe one day i’ll put to words what I feel when I see and correspond with my own mother, but right now it’s too fresh. But I am glad you have articulated an illness many people hide.

    • March 13, 2014 at 3:20 pm

      I’m so sorry. It’s brutal. Looking back now, I remember how exhausting it was to face not only the pain of the situation but also the utter hopelessness of being unable to do anything to repair it. I know some of the peace I feel now is due to the fact that part of the story has ended, and that there were some sweet parts near the end to temper the hurt of those bitter struggles.

  5. March 13, 2014 at 1:59 pm

    I have a mentally-ill mother. That fact has been the greatest source of pain, and equally the greatest source of strength in my life. I write about life and the relationships of having a mentally ill parent often over at my blog. I also just this week wrote about judgment. I’d love for you to have a read sometime. These posts, like yours, have remained to be my most popular. At first that hurt me. As if only my jagged personal past strikes interest from my readers. Then I realized the popularity of these posts, along with the outpouring of feedback I receive from each, reminds me that these personal pains are not just my struggles. And the strength I’ve drawn from them is meant to be shared with my readers to pass that strength on. These posts are specifically about my mother and her illness. You may enjoy them: “An Open Letter to my Sister. Give up, You are not the Favorite.”
    And “I’m not supposed to call you.”

    ~Best, Julie

    • March 13, 2014 at 3:23 pm

      That fact has been the greatest source of pain, and equally the greatest source of strength in my life.
      This is so beautifully put. I wouldn’t choose to go through everything again, if I had a choice, but the experiences that led me to here have been an essential part of my current strength.

      Then I realized the popularity of these posts, along with the outpouring of feedback I receive from each, reminds me that these personal pains are not just my struggles.
      You know, I wondered about that but was never able to find a conclusion. Your words illuminated that for me. Thank you.

      I will be checking out the judgment post you just wrote, among others. I’m glad for your pointing the way!

  6. March 13, 2014 at 3:42 pm

    This is lovely. As usual. Thank you.

  7. March 13, 2014 at 3:55 pm

    Both articles (yours and the one you cited) were great! I have been wondering for some time now whether my middle child might have a mental disorder. She has seen a psychiatrist and a is (supposedly) now seeing a counselor. She is completely non-communicative with us (her parents), and she is 23 – way past the age of us being able to ‘force’ any treatment on her (besides the fact that we cannot afford most treatment). I’m at a loss how to reach her at this point, but her pain hurts me deeply, as well. I wish I could find the solution!

    • March 17, 2014 at 11:56 am

      I ache for you. It’s so hard to “force” a solution when legal adults are in question, a hardship it seems almost impossible to explain to someone who hasn’t been there. In my mom’s case, my siblings and I had only partial tidbits of information–never a doctor’s name, nor any other information we could potentially use to establish guardianship and “force” treatment. There was even some talk of trying to provoke her to threat, but good conscience closed that path. Instead we struggled to obtain assistance within a system not well equipped to handle those actively seeking treatment, let alone–in my mom’s case–those actively trying to avoid it.

      • March 17, 2014 at 4:18 pm

        I’m so sorry you and your siblings had to go through all of that, Deb!

  8. March 13, 2014 at 4:22 pm

    Beautiful post. I am sorry for your pain. It is so clear how much you loved and continue to love your mother although she is no longer physically present. It’s a subject that we are currently grappling with in our family. So difficult. Wishing you and all coping with this issue peace.

  9. March 13, 2014 at 6:32 pm

    I volunteer on a crisis line here in Australia. A lot of our callers have mental illnesses, some are managing, some are not. And the pain and the fear they feel is palpable. And the stigma they face frightening and damaging.
    Your post makes my heart ache in memory. My mother had a mental illness, but because she started from a ‘high base’ she more or less functioned. And she was a danger to herself – but it was passive danger. She drank to excess and didn’t eat – but that didn’t count.
    So we lurched from crisis to crisis. She would develop malnutrition and be admitted to hospital. They would feed her up and discharge her, and it would start again. And again.
    Beautiful post. Powerful post. Truthful post. Thank you.

    • March 17, 2014 at 12:00 pm

      How I ache to read this. Thank you for sharing your experiences. It sounds like even Australia is/was set up to respond to clear, extreme examples of illness, versus treating less extreme but still heartbreaking, difficult ongoing illness. Has there been any change on this front since, or is it still a treat-the-egregious-symptoms approach?

      • March 17, 2014 at 12:11 pm

        I don’t think it has changed. And the fight I had to get the medicos to admitt that there WAS a problem still makes me bitter. And sad. For a very long time it was clear that a) we were not believed or b) we were the problem. When an event which confirmed what we were saying happened IN hospital the attitude shifted. Slightly. That was the point at which we were told how lucky we were she started from a ‘high base’. Which didn’t help my mother (or us) at all. She lived with it and she died with it. Untreated.

        • March 17, 2014 at 12:13 pm

          I wish I had something articulate to say to this, but all I’ve got is . . . aaaargh. I am so sorry. 😦

  10. March 13, 2014 at 9:07 pm

    Deborah it seems that to comment on your personal journey would best be detailed by more competent writers than I, and so I shall leave that to others. Suffice to say that no person should be singled out for any illness and that all illnesses should be treated in a dignified, respectable manner.What I would like to comment on is your bringing writing to the fore as a method of coping and information transmission. Your inner need to write about things that effect you, suggests you have a strong grasp of the wonders of writing and art as therapy. To this end you are not only helping yourself but assisting a multitude of others possibly encountering similar circumstances. Your sensitivity on such matters is something very positive that has come from an extremely difficult and emotional experience and thank you for your thoughts.B

    • March 17, 2014 at 12:04 pm

      What I would like to comment on is your bringing writing to the fore as a method of coping and information transmission.
      This is exactly it! My husband noted this about me before I even did, seeing me get a need-to-articulate fire in my eyes and saying things like, “I see you have something to write about. Let’s talk after?” Writing has always been how I transform abstract, disconnected pieces of information into a more cohesive picture I could manage, even if I didn’t really understand that was what I was doing.

      Now it tickles me to look back on how I was going to have a “writing” blog. That didn’t end up working out, but I’m much happier with how this has actually unfolded.

      Thank you for your thoughtful, uplifting comment.

  11. March 14, 2014 at 7:21 am

    This broke my heart in two:

    “I wish I had cancer, so people would talk to me about how scary this is.”

    As always, beautifully written. Thank you for sharing your heart.

    • March 17, 2014 at 12:06 pm

      My heart breaks every time I remember that statement. I’ve since heard like ones, and they cut each time. It should not be like this.

      Thank you. ♥

  12. March 14, 2014 at 2:23 pm

    As someone who struggles with mental illness, and the mother of someone who struggles with mental illness I can feel your pain. It was hard for me to admit anything was wrong because I could not describe what I was feeling. I have heard so many “suggestions” for what it could be from friends, doctors and strangers I could have screamed. When I was finally diagnosed It was amazing how relieved I felt. It was real. I wasn’t imagining it. It had a name. This is why I started blogging. To share my experiences with others so that they would know they are not alone in their struggles and there are others with the same fears.

    Thank you for such a kind and honest post. You have made the world a better place.

  13. March 14, 2014 at 6:20 pm

    Your compassion is unending. Beautiful.

  14. March 15, 2014 at 6:05 am

    I am glad you reposted, this was beautifully done. The companion piece was also wonderfully done and unendingly sad.

  15. March 15, 2014 at 3:26 pm

    I’m glad you reposted this. It takes courage to write so openly about mental illness. I hope that as more people talk candidly about illness that happens to reside in the brain, everyone will feel more compassion and less judgment.

  1. July 16, 2014 at 6:47 pm
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