I recorded this piece so you can hear how my thoughts sound as I write them down*.
Sometimes the silence is deafening. Nobody wants to talk about illness. Nobody wants to hear it.
That silence lives inside your head.
‘Where do I turn? How do I fix this? Why is it happening?’
I read the articles. I know the science. I can recite the words as why I have the pain, the fatigue, the inability to walk like I once did. I even know, that maybe I am more prone to demoralisation and depression because of this illness, it all makes perfect sense. Of course it makes sense, I’ve read the articles, they explained it to me.
But there is something more existential about feelings, and the realities of those feelings. Science explains why, my wanting to know why is fulfilled. But it is little comfort knowing why, when I cannot control my environment, or the people who inhabit it, affecting my actions and reactions. It is little help when I simply cannot control why I feel that way.
It’s a string of events – I want to go out and have fun, maybe visit a pub and have a few drinks, or go for a long walk in the country, perhaps visit an exhibition opening, or even attend a social gathering, with people I haven’t got to know properly yet. The desire to do these things is hampered by the inability to do these things. What is stopping me?! The list begins – the chairs are uncomfortable and cause me pain; the alcohol doesn’t work well with either my medication or my illness complications; the walking is too long and too hard; the exhibition is too far away; there is nobody to come with me; it’s too hot and my symptoms are worse; I am tired, I am broke, I am anxious about travel, I am disabled.
Soon, those people I spent time with, doing activities with, fade away. My support network dwindles. ‘How much longer can we spend going to her house, it’s a total non-event.’ That’s the silence in my head. It fills in the silence with conversations I haven’t had. It fills in the space with assumptions, imagined scenarios, filling in the silence with chattering, telling me why I have slipped from memory.
Where has this loneliness come from? My days have emptied. When there is less, because ability is blighted, those empty moments, they fill that silence with a booming explosion. The realisation that there is all that empty time. Plans to do, are now plans to not do. My empty days are spent watching films, TV serials, reading, sitting with my dog. Like an endless loop of the same. This isn’t how I planned to spend my time, there was never a ‘do not’ attached.
Advice is well meaning. But advice is seldom useful. Not when you know the science and the reasons, but cannot change the facts.
“Try not to isolate yourself”, they say. “Talk to your friends and family”, they say. “If you don’t have that support, build one”. Fair enough, seems reasonable. And far be it from me to be the naysayer, but here I go:
I am not trying to isolate myself – I want to do all the things, with all the people.
I do try to talk to my friends and family – they have hit mute. How much more can they listen to me, when my answer to ‘how are you?’, is the now difficult response of ‘not great, [insert current symptom] is bothering me’. We can handle acute, but chronic? ‘Why aren’t you better yet??’
Find new friends – I’d love to, but I can’t get out because I am isolated (see reasons above).
I have done what my doctor has suggested, I have learnt the science and suggested things to them myself, I have even read about the complimentary therapies that can assist, yet still this damn demyelination in my neck is mocking your advice to me. I thank you for your desire to make me that person you once loved and had fun with, I am certainly on the same page as you with that. But sometimes it is too much – it adds to my feeling of inadequacy, that I am not trying hard enough, it joins the chatter telling me you think I am lazy and just don’t want to get better, it makes me feel that I am a failure.
But! I am not a failure. I refuse to believe that not recovering from an incurable illness is my failure. My illness has created the problem, but it is not one I can fix alone.
“As much as possible, continue doing the things you like to do”, I laugh to myself. I loved walking far, exploring new places, going on trips with friends. Now I walk a short length and explore the same space day after day, rarely with friends, often just me and my dog.
‘But you are so sad, we just don’t know how to deal with that”. I hear you, it must be quite hard to see a friend so miserable and diminished.
My hierarchy of needs has changed.
Thrill seeking is currently redundant. The basic needs of health, safety and companionship are now my priorities.
Here’s something you may not know. People don’t travel through life on a linear. And that very definitely applies to me now.
Desires: Then – holidays. Now – holidays. Difference: Then – the places I went, or wanted to go are frivolous, the only thing I had to worry about was how much money I had to spend getting there and being there. Now – is it far, is it comfortable, what’s the climate like, is there much walking, is it accessible, who will go with me, can I afford it…
Be more positive. Learn to be optimistic.
I have found plenty of models to achieve happiness and satisfaction. Here is one, with it’s catchy acronym – PERMA:
- Positive Emotion. Feeling good, positive emotions, optimism, pleasure, and enjoyment.
- Engagement. Fulfilling work, interesting hobbies, “flow.”
- Relationships. Social connections, love, intimacy, emotional and physical interaction.
- Meaning. Having a purpose, finding a meaning in life.
- Accomplishments. Ambition, realistic goals, important achievements, pride in yourself.
Now apply that to yourself. Apply it to people with more money. Apply it to people with less money. Apply it to people with large families or friendship groups. Apply it to people with few friends or less family. Apply it to people with impairments – physical, sensory, mental. See how they differ. Think about the time, energy, ability that some people need to get to a level of life satisfaction they desire, or even on your level. Remember, sometimes, what seems simple, easy, and achievable, may be difficult, hard, and seldom achievable.
I think we need to take time to listen. I mean really listen. We can give ourselves those self-affirmations. We can tell ourselves we are complete, we are our best selves. But we also need – not just desire, but need – to hear those affirmations and to give those affirmations to those we choose to be friends with, especially when their life satisfaction, their journey has altered. Don’t let the silence become deafening when you can’t see them. Reach out, even if you have since filled the void your full friendship once held. We all need to feel valued.
I don’t want to end this here. Pining after forgotten friends. Or expecting you to feel sorry for me.
Pity is not what I want. And I wager that most people in my situation are the same.
I want this. I have very good reason to feel demoralised. I am not going to be a quick fix or return to the previous version of myself. However, I do need to find my way to continue my journey through life, and it is going to be a bumpy ride. We never know when that journey we take, will take a diversion. Let’s talk about illness, it is scarier not speaking, not listening, and that silence can be deafening.