As another year draws to a close I find myself in a reflective mood. In a few days I’ll be taking down all the lovely twinkly lights. More than ever I was struck by their simple beauty this year and what a difference they make to our dark winter nights. It also occurred to me that I was putting them up mainly for me and my partner as other people are not able to join me in my house. It’s important to value ourselves enough to want to make our spaces beautiful just for us.
Now moving in to the trickier bits. When the lights are away we need to remind ourselves that they are still there and that no amount of darkness can extinguish the light of one tiny candy. No matter what 2022 throws at you, focussing on the light and not the darkness will get you through it.
Regular readers of my blog will know I’ve been feeling pretty rubbish for the last few months. I knew something was up but it can take a while for it to become clear. I have had a substantial blip. All of my blood counts have bottomed out. My platelets were so low that I began bruising for no reason. I would also have regular nosebleeds. One day I woke up and my pillow was bloody and my PJ top was wet with blood. I had inadvertently scratched the top of my shoulder and it oozed all night without me noticing. It made a right mess. As well as the platelets being rubbish, my red cells had also dropped significantly. This was adding to the nausea and breathlessness. Finally to round off the picture my white cells didn’t want to be left out and so I’m also neutropenic. In other words no ability to fight infection.
Fortunately I’m not phased by these ups and downs. There have been too many. It doesn’t mean I take them lightly. It just means I don’t panic and wait and see what happens. Victoria, my consultant, has also been through this with me before. We are both scratching our heads and looking for answers but we don’t have anything definite. I had a dreaded bone marrow biopsy. You can see a picture of the tray after the carnage had occurred. It was a lovely registrar doctor doing the biopsies that day. She took her time and was very calm and an interesting person to talk to. The upshot of all this is that my bone marrow is empty and not producing many healthy cells of anything. The thoracic CT showed a possible resolving infection. My infection markers were sky high too. The working theory for now is I had some kind of infection and it’s caused my marrow to close down because of its fragile nature. Victoria arranged for me to have a blood transfusion and she increased the steroids again and also started me on another course of GCSF (Granulocyte colony-stimulating factor) These are daily injections into my tummy to stimulate my marrow to produce cells again. As some point they will redo the marrow to see if it’s been kick started again.
As a result of the interventions that Victoria put in I was able to enjoy Christmas Day with my lovely partner and I actually ate my Christmas dinner too thanks to the steroids. Those pints of blood really gave me a boost too. I was able to put some of my lights up and do some ironing and washing up. It’s amazing how these little things become so important when you haven’t been able to do them for yourself.
The other thing that keeps happening is my digestion somehow switches off and I end up being sick because food has sat still and is undigested. I had the PEG removed back in October and they did some other studies and biopsies that day. Sadly I haven’t heard from gastroenterology since and I’d really like to know the results. Covid is causing so many delays but to be fair some departments cope better with it than others. Gastroenterology has always been a bit disorganised if the truth be told. I will chase it up next week when people return to work after the Christmas break.
As we bid farewell to 2021 and look forward to the new year, it gives us a moment to ponder and reflect. I’ve always been a reflective practitioner. One of the things I’ve been thinking about lately is the challenge of staying connected when you live with such life limiting illness. I’ve expressed before how distant I feel from church and faith related matters. I also feel disconnected from my Iona colleagues and we are a community that is both gathered and scattered. But what if you can no longer gather? How do you stay connected then? I came across this on social media recently: “When a flashlight grows dim or quits
working, do you just throw it away?
Of course not. You change the batteries. When a person messes up or finds themselves in a dark place, do you cast them aside? Of course not! You help them change their batteries. Some need AA….
attention and affection; some need AAA.. attention, affection, and acceptance; some need C.... compassion; some need D..
direction. And if they still don't seem to shine... simply sit with them quietly and share your light.” I think this simple statement contains some profound points.
Many people will have heard of the personality typing system Myers Briggs. After completing a questionnaire you get your personality type. The church seems to love it. The types often have a preferred way of working and a shadow side. For example I am an E which stands for extravert. I get my energy from being with people and bouncing off them. My shadow side which depletes me is I for introvert. Introverts get their energy from silence and alone time and being with their inner world. All of us can do both but some are more naturally one way than the other. For 2 years now I’ve had to operate as an I. I can’t see people in person and have had to find ways to be creatively together. Operating in you shadow side is tiring and my energy gets zapped from doing this.
I think I’m running out of steam now after 2 years of operating like this and there still being no end in sight. What I need is others to also notice this problem and be proactive about it. Churches and religious communities need to think through the unique issues caused by a global pandemic especially for people with serious illnesses or disabilities. Are we useless or do we just need others to notice our energy is dimming and we need charging up?
As we say goodbye to the old and welcome in the new, I encourage you all to think about continuing connections going forward. If people are on the edges and margins for whatever reasons, what can we all do to make people feel included?
With regard to my unique health issues, I will continue to make the most of the body I’m inhabiting. The more life and light I can squeeze out of it the better. It will be a miracle if I make old bones, so I’d better continue to try and live 3 lives in one in order to experience it all. I know my NHS teams will continue do the best for me. I also know there will be some testing times. My job as these uncertain times continue is to refuse to focus on the darkness but to keep focussing on the light even if it’s dim.
Wherever you are reading this I hope you have a happy new year. I also hope you enjoy all the pictures of me trying to live in this body as well as all the light and love I’ve been able to share with my family and friends this festive season.
