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Dealing with Grief and Guilt, Part 1

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    Dealing with Grief and Guilt, Part 1

    I thought I would write up the things I learned about dealing with grief and guilt in a short series of posts, in hopes it might help someone else process their feelings.

    I lost of my best friend to Motor Neurone Disease in 2018, and it was the first time I had ever lost someone I was emotionally close to. I had made it all the way to my 50s, without experiencing overwhelming grief or heartache. I’ve never even been dumped by someone in a relationship before. The nearly two years since her passing has been intense, overwhelming at times, and also very educational.

    My Back Story.

    It will help if I explain, as briefly as I can, part of my backstory to put things into context.

    In 2012 I was a successful IT consultant, had my own company, a nice car and all the trappings and debt that goes along with a respectable income. My best friend in all the world, Ezri, had not long broken up with her ex-wife, and she needed a new direction in life. She didn’t have a home or a job, so we decided to get a place together. I promised to support her in every way I could until she no longer needed my support, and was back on her feet again.

    It’s important to understand that Ezri and I were very close. Most people that met us assumed we were a couple, but our relationship, in our eyes, was more like sisters. Suffice to say, that apart from my 2 adult children, Ezri was the most important person in my life.

    Ezri was looking for a new career as she had been a teaching assistant for ten years before her wife left her and she was forced to move. We both enjoyed massage, and decided to take a holistic massage course in London, about a 90 minute drive from home. The course met every 3rd weekend, lasted just over a year and had a lot of out-of-class coursework as well. We had great fun the weekends we spent in London, renting a B&B or Hotel Room, and I have many, many happy memories from that time.

    We then went on to take a 2nd massage course, this one was a very advanced sports massage course in Cambridge, much closer to home. At the end of which, Ezri came away with a qualification in advanced sports massage, and was an amazing soft-tissue therapist.

    In 2016, for a number of reasons, we decided to move to Norwich where Ezri was going to start her massage business.

    There is a event that happened that is etched into my brain as if it happened yesterday, and in slow motion. It was on 18 March 2016, Ezri and I were in Norwich City Centre heading to the estate office to collect the keys to the house we were going to rent, when Ezri tripped and fell on the uneven cobble stone walkway.

    When she fell, she damaged her left knee quite badly, but didn’t break anything. With the help of some kind strangers, we were able to get her up and into a sitting position on a bench. Then, with some effort, we made it to the agents and got our keys.

    Between March and November of that year, her leg just got worse and worse. Despite the fact that we both knew how to treat such an injury, nothing we tried helped. Additionally, all the things her GP tried failed, or would work for a week or two, then it would get worse again. Also, at the same time, her speech was getting more and more slurred, and she was becoming difficult to understand. This, her doctor put down to Temporomandibular Joint Disorder (TMJ). But, just like the leg, nothing seemed to make it better.

    Finally, in Nov 2016, Ezri got an appointment to see a speech and language therapist, who, within five minutes of meeting her, suspected something more serious was going on. She got Ezri an appointment at the neurology department at the hospital within two weeks, and after a battery of tests, they confirmed she had Fast Progressing Motor Neurone Disease with Upper Progressive Bulbar Palsy on 2 Feb 2017.

    I sometimes think about scenes in movies where someone is given terminal news, and I now know that movies never get it right. Our entire world imploded when Ezri got the news.

    In 2017, I shut down my company, stopped looking for work and sold most of our possessions. I traded in my small car in for a larger one that was easier for Ezri to get in and out of and had room for a wheelchair in the back. Then, when she became bed bound, and I could no longer afford that car, returned it to the dealership and bought a used car from a friend. I even had to borrow money from other friends to pay for that car, which I’m still driving to this day.

    Our landlord eventually kicked us out of our home and we moved into a very small housing-association property. In fact, the day Ezri came home from spending 2 weeks in hospital is the day we received the eviction notice from our landlord’s solicitor.

    For all of 2017 and 2018, it felt like something unimaginable would happen, and we would wonder how we were ever going to get through it. Somehow we would. We would find a solution to the problem, but then, 2 or 3 weeks later something several times worse would happen, and we’d again scratch our heads and wonder how we were going to get through it, wishing the problem was as easy as the previous problem we just solved. Overcoming catastrophe after catastrophe became our normal. If I had to sum up 2017 in a word, it would be ‘overwhelming’. And if I thought 2017 was bad, 2018 became ‘utterly devastating’.

    For example, in June 2018, when Ezri’s mum was diagnosed with stage 3 lung cancer and given 3 weeks to live. I remember Ezri asking, ‘which one of us is going to die first?’ Thankfully, chemotherapy was effective and Ezri’s mum is still with us today, but for a few weeks that year, everything was touch and go.

    In September 2018, Ezri’s daughter got married and Ezri was able to attend the wedding, thanks to a wonderful charity that hired a vehicle for us. That was perhaps the highlight of the year, the one good thing that happened.

    On 10 Nov 2018, Ezri turned 47. I had written to a number of Ezri’s friends from over the years, and friends we made on the massage courses, and many sent her a small present. A token to say they were thinking of her. We also had her whole family around; her two adult children, their partners, Ezri’s brother and his wife and Ezri’s parents. But Ezri was tired a lot, and slept much of the day.

    On 19 Nov 2018, Ezri’s carer couldn’t wake her from a late morning nap. She called for my help, and the two of us couldn’t get a response. So we phoned for an ambulance and for her son and daughter to come, and come quick. At ten minutes passed noon, Ezri passed away, with myself and her carer, who had now become as close as a member of the family, holding her hands. Her son and daughter arrived about ten minutes later.

    Little did I realise then, but for me, things were about to go from really horrifically-bad, to much, much worse. But, that is perhaps a story for another blog. What I want to focus on now is what I’ve learned about living with grief.
    Hanging in there, one day at a time.

    A great write up Pen. What a trial you’d both been through. Love Lynne x
    ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

    I'm staying positive and taking each day as it comes.


    • Don't beat yourself up too badly. You WERE there, when many others run for the hills, sadly my family included.


        Hi, I'm new to this forum but feel aspects of your story are echoed so many times. I lost my husband to MND a year ago and we only got the formal diagnosis three weeks before he died. So for months we had struggled on, trying to get help and not being directed to the right place.


          Welcome to the forum sallyann. It sounds like you've had a horrendous time. It's bad enough dealing with MND when a diagnosis has been made, but coping with it without any help from healthcare professionals must have been a nightmare.

          Best wishes
          Each day is made easier with a bit of humour.


            Hello Pen, You coped with everything superbly just like I did. MND is a bumpy ride through unknown terrain. I would love to know what you are doing now. I tackled my loneliness and grief issue by getting students and lodgers in. A bit like Lodgers for Codgers but for real. My council helped me there.
            And because I have spare time I am about to take over as treasurer for the Cambridge branch. Keeping busy has been the key for me.
            Best wishes