Dear Dad

A daughter's letter to her father, who lives with RA.

Kevin, Devan and Dylan

You were the first person to hold me the moment I was born. The tears ran down your radiant face with the most intense happiness, everyone in the room could feel it. You examined my face for all the features I took after you, and any of mums, embracing the reality of creating a life.

From then you took care of me within your strong arms until I could walk, then embraced me in hugs every day after, keeping our connection forever strong. You took care of me, and you still do, but I want to talk about the time where this case was inversed. To look back on when I had to take care of you, and when we met Arthur.

My old-fashioned battery powered alarm clock rang, 6:50am. It was a Thursday morning on a chilly November day. I did my usual routine, climb out of bed with no hesitation, walk down the creaky hall to the kitchen where I poured a massive bowl of cereal and then added about

6 spoons of sugar to the top of it. I got myself comfy on the sofa and with my left hand flicked through the TV channels looking for my usual show and with my right, rammed the cereal down my throat.Father and Child - Silhouette

At 7:05am I heard a deep yet soft call from you. I quickly went through to your room and saw you sitting on the edge of your bed in your usual uncomfortable manner. You needed me to put on your socks today as it was just too hard. With a smile and a, don’t worry its fine, I sat on the floor and rolled the sock down in my hands and slid it onto your stumpy foot with ease. I did it with the other foot, then like clockwork repeated it again but with larger socks, for the warmth. Afterwards I grabbed your huge BFG shoes, which fitted perfectly to your oddly, deformed feet and loosening the laces as much as possible, slid them on and tightened them like a second skin. Immediately you sat up in the ‘ready’ position and I stood directly parallel to you with my arms out forward, not too far from your branched arms you reached forward to meet my fingers. With no words, you began your three sways like a race car revving its engine in preparation. 1, 2,…3 and with a launch threw yourself up, with the support of my 10 year old strength. My hunchbacked, six-foot giant now towered over me like a tree, a forever comforting sight to me. Your strange feet out at 60-degree angles from anyone’s normal body alignment, you crippled your way to the kitchen to take your meds. “Paracetamol, Tramadol, Prednisolone, Methotrexate, Folic Acid…” calling through the long list of pills you needed for that morning I scrambled through the boxes in order to pop them out into the cute little white tub. About 6-7 pills later I picked up the tub and wriggled my fingers through each one, making sure they were all there, then I would let you check again. Then back through to the sofa I continued with my TV watching and breakfast eating.

By about 7:20am, unconsciously my senses were enhanced waiting for the clunk of the taxi over the ginormous speed bump outside the window. When it arrived, I’d be the role play handrail we didn’t have to support you as you struggled down the steps to the car.

In the summer of 2009, you were diagnosed with rheumatoid arthritis, a debilitating disease which attacks your joints. It is known as the most severe type of arthritis. At first it was only found in your feet. Being a keen golfer and an ex-footballer, you were clearly accustomed to being on your feet, so this news wasn’t exactly great, to say the least.  “I’ll just get an operation and it’ll be gone, sorted”. However, it was not to be that simple and straightforward in your case. Me being 8 years old and my brother being 6, we were never really told about Daddy’s feet “issue”, we didn’t really need to know, until we really found out. 

After the operation in September of 2009 the sea seemed calm, until the tsunami hit and nearly drowned us all. No warning, no protection, no idea. Everyday no easier than the day before and no better than the next as your immune system attacked you and the arthritis reigned terror on your joints – ‘Arthur’ as we named him, had arrived with a vengeance. Your entire body was drenched in the disease and Arthur was suffocating you to the point just before death – he was just taking you over, my Dad. Within a matter of months most of you was gone, lost to the depths of the disease. The muscle torn from your body in an instant and the little fat you had washed away. Your beige skin now turned grey and your face hollow and black, but the worst part, your joy slowly faded with it. The concept of an entire household waking up in the dead of the night to comfort a 40 year old man, in tears because he was sore inside and out was something no one could ever imagine. What do you say to a sobbing man who is just getting too sore to live anymore? You just gently wrap your arms around their aching body until the tears are no more for both of you and life must go on. Honestly, death seemed more peaceful right then.

You’re still ill, although we always knew it was incurable. Yes, you’re still so much weaker than any man of your age and still nothing like you used to be, but mentally, you’re thriving. I have most of my Dad back and that means the world. Your witty jokes and inappropriate songs ring around our ears once more. Bullied by us about your newfound love of lawn bowls against all the oldies in the village keep you way too busy but we wouldn’t have it any other way.

Through the whole process of the past 8 years we’ve been living with Arthur, we are slowly building bridges with him and becoming one again. I frequently wonder what life would be like if Arthur had never moved into our lives. What we would be like as a family, the things we could have done and experienced. But he did and we survived. Of course, it would mean the absolute world to all of us if someone found a cure to this God-awful disease that is hurting my Dad, but apart from that I could confidently say it has changed my life for the better. It has made me stronger, more mature and more grateful for the things I earn and receive. It has opened my eyes to the importance of family and being there no matter what. I can empathise with people in pain and discomfort and know in an instant what I need to do for them. And most importantly, I am kind. Not just friendly person kind but stranger on the street who jumps in front of a bus to save someone’s life, kind. I know that not everyone talks out loud about their pain but your experience, and mine, has shaped me for the better and now I’m that constant "how're you doing" in the hallway. That voice always just checking up on you and others, just making sure everything’s okay because I am kind, you and Arthur have made me kind. You have made me, me and what people like about me. Now Daddy, you will forever be the strongest, most annoying and resilient man I know.  

You will always be the BFG whose shoulders I sat upon and felt higher than the clouds

You will always be the BFG whose shoulders I sat upon and felt higher than the clouds and the man that will scare any of my future boyfriends to death, but most importantly the gentle giant that loves me and  Dylan beyond belief, forever  and a day. The day I leave home, never forget, I will always be the daughter to care for you and love you with all my heart until it stops beating. Forever and always Dad.

But now we are here.

Writing a letter - NRAS