How do you live while waiting to die

“Did you tell you’re parents and how did they take it?” I asked my friend Cathy from my end of the phone. our only connection since she moved to Kitchener a few years ago. “Well Mom took it well, surprisingly. Actually a little too well I’d say. It was a little chilling.” What do you mean?” I inquired. “Well she just was quiet for a few minutes taking it in and then she got down to business and asked me what I wanted Joanne to have. I would have liked just a minute of drama, I mean really?”  “Hey, what do you mean she asked what you want Joanne to have? What about me? Did anyone think of me? Cause you know everything is about me. So what are you gonna leave me?” I ask in my kidding tone as we laugh for a few moments. “But seriously,” I ask her “How are you REALLY doing?” Much to my surprise she answers in a really cheerful, full of energy and life kind of way. “Good. Really good. It’s surprising. Everything is set and in place and now I just have to wait. How you live while waiting to die?”

For Cathy
For Cathy. When writing this blog, she asked that her photo be of pretty flowers. This was taken and edited on my iPhone.

 

I had met Cathy twenty-four years ago when I started working in a group home in Toronto. We both found ourselves drawn to the progressive philosophy of the Agency and the Residence. It was all about a feminist approach as a team and in our work with the clients and it was the first real client-focused type of treatment. We took away the power inherent in the doctors, hospitals and psychiatrists and encouraged the young woman to be active participants and partners in their treatment. By today’s standard, it makes only logical sense for patient care, but back in the 1990’s people were called patients and the doctors held onto all the solutions in their files, the only hope of recovery, being reliant on them to fix you. And kids were still easily locked up. But it was the era of feminism, and many woman refused to shave, anywhere, wore purple t-shirts and Birkenstock, all the markers of a true feminist. And if she had short spiky hair and any tattoos back then, she also was most likely a lesbian too.

Cathy looked much different back then. She was about 50 pounds heavier and she had hair down past her shoulders in a perm that would put Cher to shame most days. She wore the $3.00 buck dollar store runners and her socks always , and I mean ALWAYS, matched the colour of her t-shirts. She had quite an assortment of coloured socks, mostly pastel colours, but I must say I never knew anyone else who wore pink, yellow, green or purple socks so well! For her part, Cathy would say I’ve also changed. When I first worked there, showing your underwear was just coming into style and was rather risque. I wore funky vests with a Calvin Klein black sports bra, like the uni-boob type and the boxers with the top of the waistband just showing above my jeans, tight jeans still back then. I remember her looking at me one day and saying “Is that an appropriate outfit for a counsellor now-a-days?” I of course, just gave her the finger. But yes, I must admit, I have changed too. I have a little grey in my hair and I’m 30 pounds heavier (okay, most probably closer to 50) and my tattoo is different today.  I also can’t wear the uni-boob bras anymore cause I’ve ventured south and need much more support! Over the years of working together, we have grown, we have gone to school, quit and started again, moved into this position and then back again. Heck, I became the boss at work and hired Cathy as my second in command. We found out she did not have the aptitude for managing money and calculating and handling the weekly petty cash and expenses for the house, which were a major part of her job. I just plainly said to her “Demote yourself  or I’ll fire you,” which was rather arrogant of me, given the agency didn’t support firing anyone. She was mature about it, that’s the British in her, and recognizing the truth in the situation, she quickly vacated the position. And we remained co-workers and friends for many years afterwards. That in itself, is a miracle of true friendship.

Throughout the years there have been good times and bad. Cathy got married. Cathy got divorced. I left a woman I had been living with for five years (before legal marriage), I meet Sue, my Dad died and Sue and I got married. Then came the question of all time. I had to know because her opinion mattered highly in this regard. I had thought about being a police officer and I wanted Cathy’s thoughts. She hated police, thought they abused their power and preyed on the underprivileged of our society, many of whom were our clients. I kind of thought that way too. I knew if she were really negative about it, I probably wouldn’t do it. I told her my thoughts and she hesitated for a second and then said “I think you’ll make a good cop.” I was dumbfounded. And given her feelings about police, I still don’t know to this day if it was a compliment or a slam lol!

I got the call from Joanne. Cathy was in Mt. Sinai hospital in a comma and it didn’t look very good. She had blood poisoning and was septic, and she was breathing only with the help on a life support system. I met with Joanne and we planned. We had to track down her estranged, not quite ex-husband David, to come and help us legally facilitate care for Cathy. We heard possible brain injury and uncertainty about the outcome. As it happens she did come out of the comma and off the ventilator. Cathy was still in hospital when Dave followed through with the divorce papers, apparently pleased to help us out in this emergency situation, but not wanting that responsibility in his life anymore.  However, being on life support had a price, a high price in Cathy’s health and ability to look after herself. She was diagnosed with Chronic Inflammatory Demyelinating Polyneuropathy (CIPD) which is an autoimmune disorder, in which the body attacks the roots and sheaths of the nervous system causing all sorts of reactions in various systems. Cathy was to spend the next several years more often in hospital than at home. She fell and broke numerous bones. She went unconscious numerous times with diabetic sugar lows, putting her into dangerous commas. Her blood pressure went off the charts into ‘stroke’ territory, only to have it all of a sudden reverse and go so low she was passing out. I couldn’t keep up with the ‘illness of the week,’ as one thing lead to another, and then another. The doctors told her there was really nothing they could do for her except fight the cascade of systemic idiosyncrasies.  Or, in simple terms, ‘keep putting out the fires,’ as they coined it. And they told her she could no longer be independent, that she needed to be looked after in a full-time nursing home. All I can say is it was very traumatizing for Cathy, a young person at 47  being housed with numerous old people with varying degrees of Alzheimer’s, Dementia and other cognitive difficulties. She got rid of most of her possessions to move into that place but after six weeks she had an opportunity to move into a semi-independent apartment building with full support. She wasn’t doing well emotionally in the nursing home and I believed she needed a chance to try the alternative. We all helped her acquire another home full of ‘things’ and in she moved, happy as a pig in dirt! She never locked back. That was around the beginning of this year.

“So this has been the longest you’ve been out of hospital in years,” I commented. “Yes, It’s been since March. Well except for the month of June when I broke my knee again. But yes, touch wood, it’s been six weeks. The longest stretch in how long, I can’t remember,” she responds chuckling. But she was clear. She would soon need dialysis and given all her health complications, they recommended an older method which would require three days a week for six hours each time. But that really wasn’t the issue. Cathy had been on a treatment for CIPD which really helps her. A platelet transfusion every month. It is extremely risky, especially for stroke and heart attack. “What I’m really afraid of is that the dialysis will push things too far and I’ll have that stroke. I’m terrified of being in a useless body with a brain and being back in the long term nursing care facility. I just can’t chance it Karen. I am so done with fighting to exist.” And that was the reality. She was medically compromised, had suffered greatly over these last six years and  truth was, if not a stroke, there was a huge possibility she would end up back on a ventilator with the progression of the condition. I could understand and I supported her decision. There would be no dialysis in her future, no CPR, no life saving interventions. She would not have too much time once she needed dialysis before becoming toxic and her organs would fail. They weren’t sure when, but said imminent, soon. Maybe three days, or three weeks or a month or two. But soon. And Cathy was preparing.

I read her this post I was preparing. “You forgot the most important things,” she said. “I’ve changed in other ways physically too. I’m minus a toe from an amputation and plus a bag from the colostomy!” “Oh how could I have forgotten those things?” I ask, as we laugh hysterically. “And I want my photo to be flowers. Big and bright. I don’t care about the type.” “Whose writing this blog?” I ask in my sarcastic tone.

“But seriously” she said “How DO you live while waiting to die?” Back here again I thought. It hung out there on the phone wire between us like a tangible thing. “ I don’t know,” I said, “But I refuse to pick out a coffin with you.” I was trying to lighten the conversation. We laughed and giggled. I said it was weird to talk about this and think about it while she is still so sane, (kind of) healthy, and okay. It really was ironic. “But you know, I’ve decided not to go into hospital. I want to die at home,” she pressed on, ignoring my pleas to leave me out of this process. So, I just listened. What I heard was a lightness, almost happiness in her voice, that I had not heard for years. I think she was actually joyful that there was an end, as yet undetermined, but a tangible one, releasing her from the physical pain and illness she has suffered with everyday.  “Well no one will be saying she lived and long and full life, ” I joked, which of course sent us both into stitches again. For over twenty-four years, we have shared and experienced so much together. She is forty-eight years old and she will not see another birthday.  I’m not sure how to be there for my friend, but I will try. And I hope we are laughing together right up to the end. I can always give her a good laugh. But all I could come up with today, given I’ve never been in this situation, was “Live your life. You aren’t dying just yet. Your healthy and happy at this moment. You’re not yet at the start of death. Just take it one day at a time” “But before you do that, can we talk about what you’re going to leave me?”

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5 thoughts on “How do you live while waiting to die

  1. Thoughts and prayers for your friend. It sounds like you have an amazing friendship and that you’re both very fortunate to be in each other’s lives and are able to count on one another thru good times and bad.

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  2. My heart is broken as I wait to lose my friend…sister and most certainly, my Rock!! Thank you for this. It eases the pain ever so slightly but I’m sure as I read it and read it again, it will provide more comfort. I’m so glad she had such honest and heart felt conversations with you. xoxo
    Hugs,
    Jojo

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