Illness and Loss

posted in: feelings | 8
Loss @ 2013 Jane Waterman
Loss @ 2013 Jane Waterman

The main symptom of the disaster was the kitchen. For the past four weeks, supplies from the constantly aborted deck painting project mingled with dirty dishes, even though not much food was eaten. Food was a source of rough comfort when remembered: an accompaniment to the usual pain pills, and the only sign of normality in the wake of the tsunami.

The two parents were sicker than usual, Sjogren’s and fibromyalgia in full flare, and they spent more time than usual resting. They cried more often too, but couldn’t really understand why. Words like loss passed through their sadness as they circled the aftermath. Their daughter, A-, had left home four weeks ago.

A- had lived with them for 18 months. For 18 months they were caregivers who thought they understood mental illness. After all, they’d lived with depression all their lives. But bipolar is nothing like depression. They tried to keep up with a girl who could be a five year-old watching Disney movies one day, and the next, a 27 year-old smoking pot and wandering the streets in a flimsy sundress at night.

It was hard not to worry and be afraid for her safety, knowing that A- wasn’t well. For 18 months they had asked doctors for help, and had sought counselling for her from the local mental health centre (because they knew it wasn’t good for caregivers to be psychiatrists too). Those appeals had been ignored several times: at first because A- refused treatment, and later, because the lead doctor said a counsellor wasn’t needed.

They had managed for the first nine months while A- refused treatment, paying for alternative treatments that were woefully inadequate, given A-‘s frequent lapses into non-compliance. They tried not to irritate her in the highs of mania. They tried to keep her safe through the winter’s suicide watch. When A- relented and asked for treatment, they stuck it out through the spring, all of them, waiting through the painful process of building up lithium (the promised wonder drug) in her system. As a group they negotiated (fruitlessly) for the process to be sped up, for A- to be spared the psychic pain of depression. It took even more begging to get help for the crippling anxiety that had brought her home in the first place. They endured many sleepless nights and weeks and months before being heard.

In mid-summer they saw the return of the girl they used to know, but it was a short-lived comfort. Then started the secrecy, the paranoia, and the rejection of close family members as being emitters of static and negativity. She began to wander out the front door in the middle of the night. Days before the disaster struck, her friends slammed the parents for conjuring illness out of shadows. The parents were made to feel they were the illness, as worn down as they were, not the bipolar. Until that last day when it was the parents alone dealing with A- weeping because inanimate words were scrolling off the tea mugs. In a trance-like state she revealed the sweeping conspiracy of the Puppeteer. She wept and stood slackly, immobile, turned inward as she listened to the demanding voices. Nobody won. Care was wrest from the parents as the hospital took over.

When A- left home, she didn’t know who they were.

They didn’t know she’d stopped her meds until the voices started. They didn’t know that over 50% of people with bipolar don’t think they’re sick. They didn’t know 50% of bipolar patients have a concurrent substance abuse problem. Four weeks now, she’s been gone, and there are signs she’s recovering from a place they never wanted her to go. Suddenly there is help – the things they needed so desperately before – there are alternatives to lithium, there is a counsellor, there is financial support – and A- is beginning her healing journey.

It is time for the parents to turn back to where their lives were before it derailed two years earlier with the constant phone calls, the depression, and the anxiety. Now, they have time to look at themselves. When one of them looked inwards she saw herself at the same age as A- in the throes of major depression. She had willingly chosen treatment and hospital, but the help hadn’t been there. Within 2 weeks she was cast back to cope on her own. There was no real help for someone who voluntarily admitted the fear of suicidal thoughts, self-harm, and even voices. She had gone back to work, even though she still fantasized about dying. She had fought her own illness for years with few allies, until she had found some kind of stability of her own.

In the present, suddenly, she was plunged into a deep depression. She tried to come to this blog to write, but thwarted herself so many times. What could she say of understanding mental illness, or even love and compassion, when she stood wounded on the other side of the gulf between major depression and bipolar disorder? She thought many times of self-harm but resisted. Depression, with its trash-talk ways, spoke through her. It led her to say that she had made nothing of her life and that she hoped she died (in surgery) next week. The words shocked her, but even more, the tears of her loving wife watching her ranting from across the room.

The self-loathing and self-hatred abated. The feeling of failure and then abandonment faded. The losses of her younger self, ill and turfed out of the hospital to deal with it on her own swept in. As they had for so many weeks, the words loss and grief swept through, again and again, like waves on a beach. She cried, as she had cried so many times over the last month. Each time she couldn’t understand the source of her tears. Her wide-open heart broke again and collapsed in on itself again. She was sick again, as she had been so many times, with depression.

She hugged her wife and they cried again. They walked on the beach in the gathering gloom that evening, and listened to Canada geese squawking as they swept in to land on the water. She glimpsed hope on the rippled glass of the last light. She heard the hush of the tide’s turn. She was loved and would keep loving, even if she had to guard her fragile glass heart closely for a while. She would take more meds to get through this crisis in her depression. She would take time to untangle the knots in her heart, and the barbs of every unintended hurt and betrayal. She would try to overcome the censor that kept deleting words from the screen. She would navigate the deep waters with the help of her counsellor. She would heal her younger self. She would live.

As it had done so many times, the loss would pass and her past hurts would heal a little more, and she’d be a little further on in her journey.

Her name is Jane.

Blessings,
Jane

8 Responses

  1. Barb
    | Reply

    Dearest Jane, I am profoundly touched by your writing and your journey. I am profoundly thankful that you write like this, that you share your innermost self with me. I am oh so sad that you have to deal with such pain, and yet, I know that some of the sadness I feel is about the pain inside of me. Your journey and your writing echoes inside of me. My journey, my pain, is different, but it's the same too. I feel a kindred connection to you (again, because it's certainly not the first time). I love you with all my heart. I wish you light, and love, and angels. Very simply, thank you.

    • blackbirdatnight
      | Reply

      Dearest Barb,

      Hugs, Sweetie. Thank you for writing. It means a lot to me that you reached out to tell me what is in your heart too. It is not an easy thing to do, and I really appreciate that you took the time to not only read but comment on what I sent out into the world. I am sorry that this feeling of pain resonates with you. Although pain is a part of the human condition, including emotional pain, I think for those of us who are sensitive, it does indeed echo. It makes us fragile in some ways, but also strong because we endure. It's not easy though, and I strongly believe that only by sharing our stories can we survive. <3

      I am so glad you are an important part of my heart family. I love you. Know that I'm often thinking of you, and always wishing barefoot angels for you.

      Lots of love always,
      Jane

  2. Catherine Gutierrez
    | Reply

    Jane,
    You have touched me so deeply, I am sorry. Everything my mother went through. You have mentioned, I don't think she ever knew. She wouldn't stay on any meds. I suffer from depression all my life. You are such a gifted writer. Thank you, I wish only for the best for you and your whole family. I hold your daughter in my heart and you Jane.
    Love catherine

    • blackbirdatnight
      | Reply

      Dear Catherine,

      I'm so sorry this is your story, hon. *hugs It is so difficult when someone we love so powerfully is ill, and it's difficult when not only is there no support, the person we love also doesn't understand the effects they can have on us. It is part of the illness, but it's difficult to comprehend, and it hurts so much.

      I can understand your lifelong struggles with depression – my heart hurts to think of your suffering. It is my deepest wish that the years to come find you peace, relief from pain, and an increased focus on self-care, with the continued love of your dearest soulmate. You deserve all of those things, DearHeart.

      Lots of love,
      Jane

  3. anet37
    | Reply

    I'm so sorry to hear about how the stress of your long struggle to help your daughter has affected you and Carmen. When the people we love have so much have problems they are our problems. I am actually convinced that stress was a strong factor in my illness. I hate to admit that I used to try to figure out how to make it better and in my mind left no stone unturned.

    I wish I could say something that would be helpful in the face of your stress. All the best to all of you in this struggle. You really did need more help than you were getting.

    • blackbirdatnight
      | Reply

      Dear Annette,

      *hugs* Thanks, hon. Sometimes just hearing the acknowledgement that it was an untenable situation helps… you begin to wonder if you did anything right. We know now that we did the best we could in the circumstances, and as you say, there really was no help at all. It's just one of those situations where only time helps I guess, but yes, it does help hearing from others who understand.

      I'm sure many of us relate to feeling stressed and experiencing a worsening of our illness. I too, for years tried to fix health that seemed unfixable. I realize now that there's a measure of peace in accepting what is, but it's difficult to completely let go as that seems complacent. There must be a happy medium.

      Thanks again, Annette. *hugs

  4. Norma
    | Reply

    My Dearest Heart Sis,

    I weep many tears, as I read your heartfelt writing. I, too, am profoundly touched by your writing, along with your journey. Please know all you share touches the lives of others, so very deeply.

    I celebrate the brave and courageous woman that you are — you are amazing, and you make a difference in so many lives – just by being you – you are making a difference in all you share.

    I feel the depths of your pain, and sadness. I am a better person for having you in my life. Thank you for the gifts you share – for helping me find the awareness within myself – to acknowledge my own pain and sorrow — thank you with all my heart.

    I love you dearly. Sending you loving healing love and hugs.

    • Jane Waterman
      | Reply

      My dear HeartSis,

      Thanks for visiting me here, in the midst of all your travails. *gentle hugs* I will write more to your email soon, but I just wanted to thank you for coming here and seeing in me the things I can’t see myself in the midst of this intractable depression. I am so weary of the world, and your encouragement helps to lift me a little further out of that dark place. For that, I am grateful to be so loved and worthy of love.

      I know you can’t see this same radiance in yourself, but I do. You are the epitome of love and compassion, and I suspect that wherever you go a wave of healing comes from you and envelops all you meet. You are precious, beautiful and dear, and I’m so grateful to have you in my life.

      I will write more as soon as I can. <3 xxxx <3

      I'm going to copy this to your email as the WordPress blog system rather sucks in that it doesn't send notifications if you forget to tick a tiny little box saying "Notify me of follow up comments by email". It's supposed to obey a U.S. spam law, but I find most chronically ill people forget to tick the box (including me), and then readers think I never responded… I must find a better system.

      Lots of love and big snuggly hugs,
      Jane

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