Another name…on my Odessey

Time has moved swiftly on it seems. It’s hard to believe it has been two months since my last update here. Procrastination does play a part in this, but really I have had nothing new to say until now.

My swollen leg and sore throat featured in my last entry. I became concerned that the prolonged repetition of my sore throat was a strep. infection, and it had occurred to me that the swelling of my leg could be cellulitis ( when a nasty critter gets through a tiny tear in the skin) – my daughter had this when she was barely two years old, in her foot, and had had a fever. That was the one time she needed antibiotics. So I saw my doctor and he gave my throat and leg a look, and listened to my noisy chest. Ten days on, my throat is fine, my breathing much less noisy, my leg is still swollen but no longer hot and I have the diagnosis of heart failure. I’ve had it a while it seems.

Odema is causing the swelling of my leg, and fluid builds up in my lungs  when I eat and walk. This is why I often resonate with an A sharp when I breathe after this activities. My heart can no longer pump efficiently to clear my body of fluids.

This is interesting and rather fascinating, although I don’t think about it that much. To me it is an explanation of some mysteries that were so curious. It seems I had a severe chest infection, maybe pneumonia though I never had that disappearing into the mattress feeling that I experienced when diagnosed with pneumonia some years ago. Now that my breathing is so much better and I don’t need to gasp for bbreath as often as I did, I must make sure that I let my doctor know if breathing gets noisy again. I certainly feel better for sure.

A couple of close friends have commented that heart failure seems fatal. It is, but I am heading in that direction anyhow. My heart may be failing, but I’ve grown attached to it. It has so much love, generousity, compassion and empathy to give. I will not give up my ghost easily, but I will do it peacefully. My daughter still needs me and my work here is not yet done, so there will be further blog entries after this one. I just need to tackle that procrastination thing.




Like Juno – this Odyssey

This entry comes quite soon after my last one. This is because I remembered something that I forgot to include in the previous one, funny really and because there has been a response that has been touching.

My whole career has been one of empowering people to change their lives for the better. Whether getting off drugs, learning how to function in society again, mending key relationships or getting free of very codependent ones, recovering from mental and emotional collapse. I am very grateful that I have encountered almost as many black people as white people in my work. It was a privilege to know them all. It may be true to say that I was the only one to be stopped and searched at gunpoint. The irony is not lost on me.

I have been thinking I’m a bit like Juno, orbiting a strange planet. Every day something happens that is new. Some of those things become my new normal, and others are like weird visits that exhibit the strange things the human body can experience. The day before yesterday, I woke up to find my left leg is swollen. Just enough to be noticeable. I have no idea why – it doesn’t hurt, and it matches my swollen elbow which does give pain fairly frequently, but the cause for that is known. My leg appears a little less swollen now. Curiouser and curiouser, as Alice in Wonderland stated.

So, my personality make up, my driver, is to ease the burdens of others. This has become very much a part of me. Someone said, ‘What is life for, but to ease the burdens of others’. There are a lot of us who live like this, who campaign in the broader sense for justice and become involved at a personal level with others. I’ve been a house parent, a counselor, a teacher of ‘life skills’,  a support worker, a listener, an occupational therapist, an advisor, a facilitator, a befriender. I’ve seen so many lives changed, not because of me but because they wanted to change and there were enough of us with various skills to enable that.

So my focus in life has never really been on me. As a child and teenager, my mother would never knowingly permit that. It was my Dad, however, that molded my character. By example, mostly and sometimes through advice or a word in season. Dad was a quiet man, much liked by everyone he met, worked with or lived close to. He had been in the SAS in my early years, until about a year after we moved to England from Germany. I must have got my sense of service from him, as his Army daughter. I was always early or punctual, I was deferential and helpful to people. I remember at school, if a friend was upset I would put my hand on their shoulder or give them a hug. School was not great for me though. My ‘year’ was herded into an enormous comprehensive school of at least one thousand students. Friends were divided into different classes so apart from a few, I seemed to lose touch with my closest and oldest friends. I know this lack of skill in keeping my friends close came from my mother, so when my daughter went to her secondary school, I made sure she invited her friends from the previous school home to hang out and have dinner.

It seemed natural, then, to find myself doing psychology and then to work with recovering addicts. I felt fulfilled and knew I was appreciated. I did however cause a few ripples with my superiors. One weekend, the kitchen sink drain blocked up. We were unable to get dishes clean in the kitchen. I called my superior to inform him of the problem, requesting a plumber to come urgently. In the immediate, I organised washing the plates and cutlery from our meal in a shower room. When no plumber had materialised in the now neat and tidy kitchen two hours later, I called my manager again. I felt I was being stonewalled. After another half an hour I drove to his home and left a message with his wife to tell him to come urgently or I would have to take ‘action’. I had no idea what action, maybe a sign on the roof, or a march in peaceful protest? A refusal to teach? A sit in? After another meal had been cooked, eaten and more plates, cutlery and the pans had been washed in the same shower room, I felt very indignant on behalf of the residents. This was so unfair. They were all paying to be in the programme. To do chores as part ofthat is good, but to have no water available in the kitchen is shameful. At last my manager, arrived at the house. He made excuses about costs and that we could manage for a day or so, ya da ya da ya da. I hit the roof, as we say in English, and several German phrases came to mind as well. I told him in no uncertain terms that if this had happened in his home it would be fixed by now. I swore at him. I railed. Rarely have I been so angry. I even challenged his attitude to the black guys in the house, and his white privilege. My manager was stunned and rendered speechless. He then apologised and called a plumber. My care for others can be passionate.

Many who are reading this blog have remarked on my decision to be happy. It isn’t so hard when one has crossed continents several times, had to live out of suitcases for extended periods, and had to leave furniture and a car in the US. Possessions don’t bring happiness, neither do places, or people in the main. We find happiness within ourselves, and then everything else is a plus. I don’t ‘strive’ to be happy, I am happy by grace. Grace in the sense of amazing grace. Unmerited ability given by God. My faith is simple but profound, and is by conviction, not weakness or needing some sort of comfort. In fact, to have faith in God, to belief in the teaching of a socialist Rabbi, takes courage because there are plenty of people who would mock me, and say science gives no room for God. On the contrary, I think the more I know about science, the more awe I have of God. Because I have no fear of death, I am happy.  Yes I wish I could obtain more ice cream of a certain flavor, yes, I’d love to run with my dog beside the sea. Grace helps me to put wishing to one side. I do wish people didn’t expect my symptoms to conform to their wishes, want me to do what they want when I am unable to do that. I must forgive, I choose to forgive and in doing so I free myself from resentment and hurt and they  can sort out their own feelings.

As I said in my first blog entry about my odyssey to dying, I don’t want to be miserable because that is suffering. I choose happiness.




Further on this Odyssey

Procrastination had a bit of a  grip until now. I’m finding the honesty needed to write this very draining. Also, around two weeks ago, I had a ghastly thought – what if I don’t die of this? What if I continue in pain and exhaustion, unable to breathe properly, my world becoming smaller as time goes by?

Whilst I am not anxious for my demise to occur soon, the thought of dragging on in this way brings me misery, which is not an option as it will increase my pain and cause suffering. I need to bring some meaning to each day, whether by writing, socialising, being kind to others, being kind to myself, enjoying my daughter, engaging with discussions, meditating, eating lots of chocolate (the only dairy I allow myself), and great ice cream now and then. (OK, that’s dairy too, but rules never really work do they?)

Last week, I read an interview with someone with whom I had a strange acquaintance and with whom I am estranged for the most bizarre of reasons. He is afraid of death. The compassion I felt for him almost brought me to tears. He is terrified of the one thing that is certain in life. I remember that fear, and other fears that the immaturity of youth carries with it, causing one to bargain with God. Please don’t let me die before I (experience intimacy, travel the world, buy this, achieve that…). The variety is large. I realise now how the fear of death affects his everyday living and wonder how much less hectic his life would be without such fear.

This week I have had a bad cold. In fact, this ‘cold’ has hung around for five weeks as my immune system is so poor – the Dystonia from which I suffer is an auto-immune disease among many other descriptions. The first four weeks the symptoms were nothing much, the occasional sneeze, a scratchy throat, the need to blow my nose once in a while. This week, my throat became very painful, sneezing seemed to be non-stop, but the worst was the coughing and breathlessness. At one point I wondered if I should call an ambulance as breathing and swallowing were so painful, dreading that I needed antibiotics. Today I have felt a lot better, although now, having eaten dinner, breathing is harder again. I know that if my throat becomes painful again it will be hard to avoid antibiotics as it will indicate a strep. infection. It seems a pity to let a boomerang of a sore throat cause misery.

So, I continue to choose to be happy. Content. To choose anything else would be pointless and cause the misery and suffering that is so pointless. I have a part-time carer now. It helps a lot with practical things, like washing my hair, getting admin done, my washing. Sometimes it’s good just to have a hand to hold mine (I know this person well). I dread making phone calls or answering the phone. It’s good to be able to pass the buck sometimes. It also makes life a lot less worrisome for my daughter.

I’m in a good place, although this week has been difficult. There is much for which to be grateful. I’m looking forward to having my hair cut, after far too long. I can’t change anything but myself, and I’m glad of that though I am aware that some changes are needed. But that is not my business. Not directly. It certainly isn’t my responsibility.