If I Leave Here Tomorrow, Would You Still Remember Me
Today I speak about how my pain impacts my life, being part of the world despite my troubles. Learning how to cope with the world around me, and a little memory.
Featured Image – A sketch I drew on my phone, when I close my eyes and visualise my pain, it takes on this appearance.
Title Song – Lynyryd Skynyrd – Freebird
Warts and all.
So i have given a slight example with some parts of my life that are more difficult because of disability. Some things are easy to imagine, but there are so many things that become difficult or near impossible because of impairments.
It is so frustratingly difficult to ask for help or admit defeat in these daily battles. Let me be blunt and list some of things i truly struggle with.
- Getting out of bed, or up from a chair
- Dressing myself
- Personal grooming, and when you are a poser like me this is important
- Socks…seriously fuck socks.
- Shoes, only slip ons
- Stairs..god damn i hate impact pain
- Lifting things, my strength is shockingly low.
- Sneezing, coughing, hiccups; all of these are torturously painful.
- Going to the toilet. I learnt quickly to sit, but teaching myself to wipe left handed has been so hard. hey i told you i was going to be honest.
- personal hygiene, getting in and out of the shower when it’s above our bath, this has been helped by getting a handle.
- not being able to do previous hobbies and activities because of limitation of using one hand.
- food…damn opening things, using a knife, bottles and jars are the domain of Luz.
- walking the dog, guilt kills me that i can’t walk my dog more, I have managed a few little walks.
- just moving, as i said impact pain is one of my least favourite, it has a sharp stabbing feeling.
- answering the door – getting up and feeling rushed to get to the door, almost impossible.
- Bending down. it just doesn’t happen.
- Sweating, i sweat when I am in pain, also when I am nervous. sometimes I feel like I look like Lee Evans after he does a stand up gig.
- cleaning my house. i have little jobs i do, but I can’t maintain my own home.
- Clothes washing – from not being able to carry the washing, not being able to pick things up, cant bend down to load or unload.
- travelling…it hurts.
- being around people – worry that i might get bumped or nudged makes me overly protective and sort of stiff so more painful by not relaxing.
- Sex (sorry) It’s agonising. The pain killed my libido dead. The depression buried it. They few times we have tried have been so excruciating.
- Entertainment – finding things to do with your time can be difficult.
- Standard grown up tasks, driving, caring for family (baby sitting etc)
I mean honestly this list is could go on, and every disabled person has a list of things they cannot achieve anymore. I say cannot achieve, but that is incorrect. We cannot achieve this things without help. Most of this list is things that I have help doing, Luz can’t do everything for me and I often can feel a burden. This causes self doubt and the fear of being dependant. Its a very big issue that I had to deal with. I for a long time didn’t see pain as a disability. I thought because i could eventually do things or find ways round, I wasn’t disabled because i was able to do some things. I couldn’t accept there was a massive, seemingly unending list of things i can’t do. I chose to hide and make myself a recluse. This directly affected my mental health as a consequence. It is no surprise that when I was offered psychotherapy, it was with a therapist who had experience with disability and chronic pain. I have respect for anyone educated, anyone who has dedicated their life to learning a skill. This respect was especially true with my therapist, she spoke with such confidence and authority. It was very easy to put my trust in her. When I wrote a testimonial to the NHS, I asked them to keep funding this unique therapy. I explained in no uncertain terms this therapy saved my life. It made me realise i could continue living with disability, I was allowed to ask for help, I was allowed to have bad days and I didn’t have to be ashamed of myself.
Psychotherapy sounds scary, when I first heard the phrase, I was scared. i had no idea what to expect. It felt like last chance saloon for me, I had got so mentally bad, that it was this or be sectioned. In reality it was hard, but not scary. It pushed me further than i ever thought possible and it was immensely draining.
It makes me realise that I can’t just half commit to physical therapy. I need to be 100% involved. I want to get better, but I do have to accept that it is more likely I won’t become pain free. Realistic feelings are not wrong, but there is positivity all the time as long as we take the time to understand and see it. I might not ever get back to where i was, but I can get better. I can improve myself, and I can become part of the world around me.
That is the important thing, and while I have so much to speak out about myself, I want to be part of the world. I want to see the world! I want to connect to people, friends, and family.
The interaction and reaction I have had from this blog is overwhelming. Kind words make such a difference. Knowing people care can be so important. People will often say “oh you know i’m always here for you”. Sometimes you need actions. This weekend I had the most simple act show me this. My niece Lola was sat next to me at Family meal, and not only had she understood to be careful as she was sat to my right arm. I dropped my walking stick. It had happened earlier and I had asked Luz to pick it up. This time i dropped it and Lola immediately picked it up and handed it to me. Then later as we were leaving, Both Lola and our other niece Violet, ran over to say good bye. Small gestures to some, but to me it was care and compassion from unexpected sources.
A smile can come from anywhere, and that’s the great unexpected I look forward to now. When we smile, the pain is still there, but it takes a back seat for that moment. It becomes bearable, briefly we are lifted and we know that hope is there.
I hope you can know, that no matter what happens in this world, no matter how detached or lonely you feel, we have a place, we have the ability to smile. When someone smiles at you, you smile back. It’s something we can share.
I struggle to make eye contact with people, partly due to my neck tilt and not being able to look at people directly. This was worsened with depression as I chose to completely avoid eye contact. It made me feel vulnerable and weak. I hated the feeling of people seeing how hard it was to cope. I still struggle a little to make eye contact with people, windows to our soul also show our deepest scars. It’s impossible to hide your pain. The instead of being taken seriously you either get sympathy or people think you don’t care what they say. I have however realised that eye contact breeds trust and it also triggers the smile. Many people naturally smile when you catch their eye.
Give it a go, look someone in the eye today, and smile. Totally commit to it, y’know go full loony with it. I’m pretty sure you will receive a smile in return. We talk about yawns being contagious, but happiness really is. Positivity comes with time, but it does have a domino effect. We need to hold on to our good moments and let go of the baggage that holds us down.
I have recently been connecting directly with old friends and family I haven’t contacted for far too long. Being part of other people’s lives gives you purpose, but also creates a sense of place.
I loved the film “I, Robot” There was a scene in the film, where abandoned robots left in storage crates were revealed to be clustering close together. This is something I can see in life at the moment, we need to be close to people. Not necessarily literally, although hugs and physical love are important, but being close to others thoughts and their lives is an important aspect of our being.
Freebird, this is the song I have chosen for my title today, this not only reflects my spirit at the moment, it relates to a great time in my life. I caught up briefly with a Rai yesterday, a friend from my college years, and also my rocking hard bandmate. I used to play bass and Rai was rocking out on the keyboard, she reminded me yesterday about the zone we would get into while playing our cover of freebird. One of the most beautiful parts of making music is feeling it. Freebird is a musical blend of some extremely complex and emotional strings of music, it resonates so passionately to most who listen to it. Rai and I used to just get lost in the solo, and you start to get this almost link through the music, like you know what will happen next. We used to have our practice and the whole band would relax in one of Melton’s many pubs and just talk. I mean nothing was out of bounds, we would make fun of each other, test each other’s beliefs and be at ease in each others company.
I have never been great at telling anecdotes or finding funny stories, mostly because the memories I treasure the most are moments like these, connecting with people on a really intimate level. They might not make for the best tales, but now I look back and appreciate those moments so dearly.
I was an eager teen, just wanting to impress the world around me, I struggled to find my place until I reached college. I suddenly was surrounded by other extroverts, people who shared a passion. I learnt so much about myself and what I wanted. It didn’t take long for me to decide I wanted to express myself through music. I picked up a Bass guitar from a local music shop and started to teach myself. In my 3rd year of college (i went to college for 4 years because I loved it so much) I met a drummer called Adi, he was on my media course, and we suggested it would be fun to make a band. We put up posters for a guitarist and singer, we finally got a message from Patrick, a guitarist who was one of the most gifted players I was lucky enough to play with. He taught me chords, music theory, but most importantly he introduced us to his girlfriend at the time, Rai. The 4 of us would rent out a music practice space once a week and just jam, mostly playing Sweet Child O’ Mine to death. We never actually performed a gig, but it didn’t matter. The sharing of the music was the fun, the connection and friendship we all shared was a defining part of my life.
I miss playing Bass guitar, It left quite a hole in me having to stop playing because of my disability. I still proudly display my basses in my bedroom as a homage to love I have for what they gave me. I was in many bands after my first one and met some great people and made some immense connections. All because I decided one day I wanted to play Bass guitar.
The urge to create music still flows through me and I have been recently considering getting a small 25 key, keyboard. Perhaps I can continue to write and compose music and even find people to collaborate with.
Here is the live version of Freebird, take 15 minutes, sit in the sun, close your eyes and just let the music flow through you.
I also love the little r2d2 like noises in this song, always make me smile.
Until tomorrow, Thank you for reading.