What has hair, a death festival and chronic pain and fatigue got to do with each other?
Thinking about meaning
My will to live depends on my ability to find meaning in the life I am living. Sometimes when I can’t find it I have to make something meaningful.
Meaning for me is about feeling connected – to myself, my body, people around me, nature and the things I do. Feeling an emotional connection, a sense of space to be authentic, being seen and heard but also enough calm to be able to see and hear what is around me.
Meaning for me is also about enjoyment, enjoying what I do both in a sensory way but also in practical way by trying to contribute in one way or other to the lives of people around me.
Living with chronic pain and fatigue can feel incredibly meaningless. Most of the time I don’t know why I am in pain or exhausted, there is no obvious cause and seldom any straight-forward way of dealing with it. I get angry and frustrated, I feel grief about the things I have to accept I cannot do. I have to adapt on a daily basis to what is realistic on that day. And if I can’t adapt my plans I have to deal with the consequences afterwards. And a good day can quite suddenly become a bad day because I overestimate my energy levels.
Because I so often feel powerless I try and find the areas where I do have a sense of choice and power. What can I change? What can I do differently? How can I make things easier for myself? And how can I make the difficult stuff more meaningful?
Caring for long hair
One thing that has caused me increasing frustration is caring for my hair. I have very long hair and I love having long hair – it suits my sense of self. But practically it’s a nightmare. Washing, drying and brushing it causes me pain and makes my arms fatigue. When my hair is not clean it affects my mood and makes me self-conscious. I never do anything pretty with it because spending more than a minute with my hands doing stuff around my head makes my hands, wrists and shoulders hurt. So it’s either in a messy bun or a simple braid.
I’ve been thinking about cutting off my hair for more than a year now but didn’t want to make a rash decision based on frustration. But then a friend who has been battling with cancer wrote a blog about receiving a wig from friends. And I though to myself that it is silly to hold on to my hair when it’s causing me pain and it could be making life easier for someone like my friend. So I decided to donate my hair to The Little Princess Trust.
This decision got me thinking whether there was anything else I could do to make cutting my hair off into something more meaningful. I thought I could try and raise funds for something I care about and give me a date to move towards. I went over different charities and projects in my head and as soon as I thought of Pushing Up Daisies I knew that was what I wanted to raise money for. And spread the word about.
Passionate about death and dying
I have experienced a lot of disconnect in my life and that led to an overwhelming sense of meaninglessness and feeling like dying. Cause what was the point? I first realised I felt like dying when I was around 10 years old. I started contemplating death a lot – not just in terms of taking my own life but in general. However I quickly found out that death was not a popular topic. I wanted to talk about why suicide was considered a sin and shameful. I wanted to talk about what might happen or not happen when we die. I wanted to talk about why death and getting old is something to avoid. But there was nowhere to talk about this. There was no spaces where I could talk with others and make sense of my longing to die.
Now I live in a place that has an annual death festival and it makes my heart sing. I seriously get soooo excited just thinking about this. It started small but has grown and the past couple of years there were over 70 events during the week the festival happens. The premise for the festival is that it is volunteer led and for locals by locals. It’s about creating a community where we feel able to support each other with all the things that tie into death and dying. A community where it’s okay to talk about death when we bump into each other in the supermarket.
Death touches all of us yet we are encouraged to try to avoid it, stay fit and young and leave the gory (both in a practical and emotional sense) bits to professionals trained to deal with ‘that kind of stuff’.
Death has become compartmentalised and its easy to feel out of our depth both if we have lost someone, are dying or know someone who has been bereaved; not knowing what to say, not knowing how to support, not wanting to intrude and not wanting to do the wrong thing…
The festival feels deeply meaningful to me both and a personal level but also in a communal sense.
Letting go of my hair
So I am letting go of my hair tomorrow.
I feel pretty ready for it though I have loads of mixed emotions as well.
I am hoping my hair will find a home on somebody elses head. I am hoping my daily life will be a lot easier and that taking a shower and washing my hair will no longer be something that take up too much time and energy and that I dread doing. I am looking forward to cutting off my hair with people around me who support me rather than doing it alone in a moment of anger. I am grateful to all the people who have donated and pedged to sponsor me. I feel excited that the fundraising has been an opportunity to spread the word about a festival I think is beyond awesome. I feel grief about my body’s limitations and sad that it affects my ability to care for something so basic as my hair.
More about Pushing Up Daisies on the website pushingupdaisies.org
If you want to support me in raising funds and letting go of my hair go HERE
More about ME here