Growing around my grief

Lois (right) and our friend Karyn (left) having their PhDs conferred. I was so happy to be able to be there, to see these 2 wonderful women, who studied and wrote about women’s live and gave voices to the voiceless, walk across the stage. It was my last graduation as Academic Manager for Arts, so a very special day.

Yesterday I buried a friend, Lois. Well, I didn’t literally bury her, I left that to other more able bodied people, but I was there when it happened. She died on Monday, both suddenly and not.

She had cancer; an aggressive form of pancreatic cancer which was only diagnosed, at stage 4, earlier this year. Only a week or so ago she was well enough to be spotted by another friend at a cafe in town, on the phone, organising her next project. By Monday night she was gone.

In a way, I’m happy for her. It was fast and relatively painless in the end. She was expecting this to drag out for weeks or months longer, and she dreaded that slow and painful decline, but her body did her a solid and just stopped fighting.

The funeral was lovely. There were plants from her beloved garden, art and sculptures she had made. A beautiful setting, nestled between the mountains of Banks Peninsular and the waves of Lyttelton Harbour, which is fed by the great pacific ocean.

It was a celebration of her life, and the love she planted, like seeds she’d smuggled from England, in every heart she met. It was painful and full of regrets of things not said or done, of a future missed, and gratitude for the past, the shared love and experiences, and opportunities that had been taken.

Returning to nature, as naturally as she could.

Lois planned her own funeral, writing or gathering everything that she wanted included into a thoughtfully curated celebration of love and loss. She had carefully scripted everything bar the personal messages from those who loved her. She even had a message recorded in her own voice… or so she’d thought – technology got the last laugh, as that recording hadn’t worked, and the transcript didn’t make it into the printed sheets to be read out. Other than the technological failure, it was perfectly orchestrated to facilitate our grief and help us to carry on without her.

She knew why and how to do this because in life, and even in her own death, Lois was a grief counsellor. If you’ve received grief counselling services through hospice in NZ (and possibly elsewhere in the world, I don’t know), they will have used at least some of her models, resources, and methodologies. She used the phrase “growing around grief” to explain how the grief never gets smaller, but out lives get bigger, so we don’t notice it quite as much or as often.

I regret not speaking to her about my illness and the grieving process I need to go through, but she’s planted that seed in my mind now, even after she’s gone, and I will try to remember to help it grow.

Some of Lois’ art.

Grief is often overlooked by people with ‘non-terminal’ chronic illnesses and those who care for them. We’re not automatically referred to someone to help us come to terms with our illness. We don’t face our own mortality, or the mortality of the ill person we are caring for. Instead, we carry on, trying to live our lives as if we were well, maybe with less activity to challenge our tired bodies. This is a mixed blessing, of course, as Lois describes the flip side in this piece.

It wasn’t until a WINZ case manager, of all people, pointed it out to me, that I realised I was fighting my body in an attempt to deny the reality of my illness. I didn’t want to say goodbye to my old life. I didn’t want to face the grief of acknowledging that the me I used to be is gone and (probably) never coming back. You can’t grow around your grief if you don’t recognise that the grief even exists. Nor can you grow around it when you can’t see a you that isn’t defined by it.

When I realised I was trying to live in denial of my illness, I was able to adjust my mindset, which did help, but it left me with the new problem of working through the grief of that, both individually and with those who love past or present me. I faced it head on and aggressively and actively acknowledged its impact on my life.

Instead of denying and ignoring the illness, it had become all consuming. Instead of being a person living with ME/CFS I became a human embodiment of the illness. I need a middle ground. I need to find the life that includes both ME and me.

But how do I grow my life around my grief when I no longer have a life to grow? I can’t work, my hobbies of the past aren’t compatible with my condition, I struggle to get out to visit people…

I do still need to talk to my doctor, and to WINZ, about grief counselling because I don’t and shouldn’t have to face this alone, but in the meantime I have Lois’ example to guide me.

Back in February when she was told she had weeks or months left, not years, she carried on. She didn’t let her impending mortality define her. Along with launching into new academic and counselling theory projects, she kept up with learning new art methods, working in new ways on new media. She approached the hobbies she already had in a new way, to ensure that she could still enjoy them and that they would live on after her. She found ways to build a new life around that grief.

So to that end:

  • I still go to the gym with my husband, Ryan. I can’t exercise, but I can assist him in his training and enjoy the social and sauna aspects of the place.
  • I am learning to do art. Ryan and I go out and do sketching. If I can’t go out, I can still art from my room, or the lounge, or even from reference images online. I’m not very good, but that comes with practice. I like watercolour sketching, while he’s more pencils, but I’m exploring and so is he.

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  • I’m getting back into massage and aromatherapy. I studied these when I was first sick and still in Auckland. I thought I was going to get a naturopathy degree, but I changed my mind about that one. It was immensely helpful to me at the time because in massage you move and breathe differently, working far more in concert with your body. I’m keen to further develop my skills in this area, and maybe into other related areas, such as Reiki.
  • I miss singing. I want to find a way to work around the limitations that ME/CFS puts on my voice and my tuning. So far, the frustration of random bouts of tone deafness has put me off, but I’d like to work out a way to move forward with this.

It’s a start. I’m taking a step on that journey to find the balance of living my life with ME/CFS, as a life, but still acknowledging and honouring my limitations, and the pain of the loss of who I was before. It will take time, but I have plenty of that… I hope.

If you have a chronic illness, or care for someone with one, what have you done to help you grow around your grief?


4 thoughts on “Growing around my grief

  1. everytime when I woke up and think what i like to do the day I have to come back to reality, that it is not going to happen, not is this body, it has been 15 years one would think I will know by know….

    Liked by 2 people

    1. Yeah. It’s a long process. I’m 14 years into this journey and I’m still struggling to accept that I’m not going to be able to do those things. The goal here is to replace them with something I can still do. I’m fortunate enough to still be able to do some things, so I should focus on those instead of the things I’ve lost. Accepting that I have to do things differently helps too – I can still go to that expo or concert etc, but I have to use my wheelchair.

      Liked by 1 person

  2. You describe our ondition/ our affliction so well. I honestly feel like I am a barely standing corpse, trying to exist, ‘pretend’ in a world that really doesn’t relate to such profoud fatigue that my body is trapped in. My mind continues to fight what is a losing battle and it really has taken my life, as I once knew it.
    My mornings and evenings revolve round Nurse Maude arriving to apply and remove these hideous and very expensive, made to measure compession hosiery ( $795.01 – never did find out what the 1 cent was for!) and then I fall asleep when watching TV or trying to read, waking at 2am. 4am or even 6am ( often sleep no more than 3 -4 hr lots) and then like the last two days, have stayed up, if at 6am, rather than risk falling asleep and not being showered and dressed for NMaude.
    I’m so tired, but also bored. Used to love walking, now my hips and spine are too painful to go far and need to use a walker always ….if only I drove, could drive somewhere and soak up a view, lose myself in a book shop, a movie.
    I have always been a Pollyanna but even that eludes me these days. Well, thanks for allowing me to have a moan, I could continue with so much more of my health conditions and losses but I’m completely wiped out from even writing this.


    1. Thank you so much for your comments. It is definitely a huge frustration that people think our condition is about being a bit tired.
      Someone asked me recently about how someone with severe ME spends their time if even thinking can hurt. You should have seen their faces when I described how boring our existence can be.

      Liked by 1 person

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