There are times when our world tilts on its axis so much that we lose the foothold we have in our lives. Everything shifts…and we realise the world we knew yesterday, or five minutes ago, or last week, doesn’t exist anymore.
I know that one of the few constants we have in life is change. And we do not have much control over many things that happen. I am talking about the last few months where I have had moments of looking at my life and finding it unrecognizable.
Painful moments, difficult moments…and there is no way to pinpoint where it started and only one way to go…forward…
About this time last year I started seeing my extended family and friends again, coming out of the fog of the end of my PhD. Primarily seeing my aunt and uncle…and slowly realising that things were not quite right with my uncle. I started seeing them more often and watched changes in my uncle’s behaviour. This was not the same person I had known.
Visits became regular…weekly in fact. My uncle was diagnosed at first with frontal lobe dementia (explaining the changes in personality) and then later with motor neurone disease. My aunt was caring for him on her own. I did what I could – driving to an appointment on the other side of town, ditching work to be with them when he had an assessment and I knew my aunt was struggling to cope with his behaviour.
It was six months of care, support, love…and difficult conversations. Talks of power of attorney, care homes, wills, and cruel degenerative diseases…while watching week by week as my uncle’s diseases progressed. His behaviour became repetitive, his sleep patterns disturbed and his motor skills, amongst others, deteriorated.
I was powerless. The only thing I could do is be there for my aunt and uncle. Visit and call. Keeping going because I believe that family is what is important…love is what matters. Whether family by blood or friends we have as family by choice.
My aunt and I noticed the motor neurone progressing. And then my uncle contracted what we found out was pneumonia. I saw them both on Thursday night for our weekly dinner…he had trouble coughing, indicating his diaphragm muscles were going. On Friday afternoon at work I received a phone message from my aunt. She was in the hospital emergency with my uncle, and had signed a “do not resuscitate” form. He had pneumonia. I swore. Loudly. In the middle of my office.
I called her back and found my parents were on their way. I met them at the hospital. My uncle was ashen and unhappily on a stretcher in emergency. He had already tried to get out of bed. It took three of us to keep him there. He repeated himself…incessantly. All he wanted was to get dressed and go home. He was admitted…we settled him as much as we could and took my aunt home. Exhausted. I told my aunt I would be back at 9am to take her to the hospital…and I was…Saturday, Sunday, Monday. He looked better with the pneumonia starting to clear, the antibiotics were working. The motor neurone was getting worse…Sunday and Monday he was more subdued. I went home Monday night (a public holiday in Australia) and went to bed.
Then it happened. The phone call at 5.12am on Tuesday morning. My aunt crying on the phone. My uncle had passed away in his sleep. I dressed and drove to her place, only pausing to call my parents and ask them to meet us at the hospital. It was unexpected. A shock. And because I had to do…I did. I went and got my aunt, went to the hospital, I went in with her to see him. My parents arrived. They went to see him. I sat, head spinning…working out what I needed to do. We took my aunt home, I informed work what had happened and arranged to stay with my aunt that night. The details are irrelevant I guess. I made cups of tea, lists, wrote things down we needed to do. It didn’t hit me until two days later. When I stopped doing. Stopped looking after everyone else.
The rest of the world continued to turn. Funeral arranged, relatives flew out from Scotland. My aunt asked me to give a eulogy. I did. And I don’t know how. But I found words…and said them as eloquently as I could.
The world keeps revolving…at the same time as this, a very dear friend of mine was at home, in the US, at the end of a long and painful battle with cancer. A friend I met online and who was to become one of my strongest supporters in the last year of my PhD. Someone who pushed me, listened to me, and reminded me of just how strong I really was. A friend and his family who welcomed me with open arms when I visited the US last year. I knew he was sick and didn’t want to put off the chance to spend some real-life quality time with him. I am now ridiculously glad I did get that chance. I have a headful of happy memories and also know I had the chance to say thank you in person. To take the chance to stand next to someone, put your hand on theirs and say “you make a difference in my life, you matter…thank you.” And people really do need to be told that they matter, that you believe in them, and love them. Often. I cannot think about how I would cope now if I hadn’t pushed myself to make that visit. Luckily I don’t have to, and those memories are priceless.
And my sister, recently married, had her father in law in the same situation. Sick…in hospital the same day as my uncle, and then at home. In the week following the funeral, both passed away. It doesn’t matter how much we expect this, when it happens it is still a shock. A heart-rending, monumentally painful moment as realisation floods us that we can never see that person again. I was lucky that I am also friends with this person’s family and was able to pass on messages of love when he was at home. And I have no doubt they knew how dear they were to me. Again I had to find words to say for a memorial radio show. I did find them, and they were not enough. But I found them and said them.
The only thing I feel I have learned is a deeper definition of love. Love is watching someone care for their husband no matter how difficult and frustrating. It’s in the tender moment you put your hand on your uncle’s in silence to calm them and reassure them even when you know there is nothing you can do. Love is making cups of tea and sitting with someone as long as they need you to. Love is continuing to be there, checking in with someone, letting them know you will always be there. Love is understanding when they want to be on their own and not talk to you. Love is everything and the only thing that matters. We don’t say it often enough…well, I know I don’t.
I question what is important to me. I cry when I need to. I re-evaluate my priorities. I get angry for no reason. I value above all else the friends and family who love me…particularly when I am not very lovable. Because that’s what it is about. Love at all times, the hard times, the crazy out of control ones. And I love them so much more than it is possible to find words for.
Perhaps the world tilts so much to give us perspective…perhaps it just tilts because shit happens and we have to get on with life. We don’t get to choose what happens to us, we do get to choose how we respond to them. So we cry, we get angry, we sit with the pain of knowing we won’t see someone again…and I realise in this that they will always be with me. In my heart, in my memories…I can choose to cherish those. Feel the pain…and at this moment I do, sharply and deeply…and focus on a happy memory and smile through the pain.
I don’t know what is still holding me onto the surface of this shifted world I find myself in. The invisible threads of friendship and love that have woven around me and hold me in place when gravity has failed…a belief that my loved ones are no longer in pain and confusion…love. Perhaps love holds me in place.