I still can’t believe you’re gone. That I will never see you again, speak to you again. The past few days have been difficult as I try to come to terms with the fact that I will never see you, speak to you again. But you’re no longer in pain, you’re no longer suffering, no longer being betrayed by a body that is failing you whilst your mind, your beautiful smart mind remained unaffected, alert and aware.
However, I can’t stop the regret, regret that it has been so long since I last saw you, last spoke to you! The regret that I never made the effort to get your telephone number or address from your family after my phone died and I lost them. Four years have passed since I last visited London, but I’m glad I made visiting you the priority and I have the memories of that visit, that I was able to introduce you to hubby and to 4 of the children. All of them say that the highlight of that holiday wasn’t having a ride on the London Eye, or spending the day at Lollybop, it was the walk along the Thames back to your house, it was sitting in your garden chatting till the kids started falling asleep, it was being with you again, just like it always used to be!
I remember the day we first met. I was 11 years old and I had just started secondary school. I didn’t know anyone in my year, I didn’t know anyone in the whole school, except my brother in his final year. Whilst the rest of the kids in my primary school had gone to one of two secondary schools, I had chosen a different one a few miles away. I loved my new school but making friends was hard, even harder when you’re shy and to make matters worse, I had an hour wait after school had finished waiting for the train home, alone.
One day one of my classmates said she was waiting for the train home as well and did I want to hang out with her, so I did and when we finally reached the train station she introduced me to her family. Your mum was pregnant with your baby sister and you had all joined her for her appointment. In the ten minutes waiting for the train, I knew you were going to be my best friend. You ignored how socially awkward and shy I was and you put me at ease. You had the ability to make friends fast and you were such a special person that it just shone out of you and I knew you were going to be the best friend I would ever have. The hard part was the fact you were only 9 and I had to wait two whole years until it was your turn to start secondary.
Before you started I heard a rumour. Someone was talking about your sister and saying it was a shame that one of her brothers would leave secondary school in a wheelchair. I didn’t know which brother they meant, you or your younger brother, I hoped it wasn’t you, but it was. We never really discussed your illness, you were just Lee to me. Your illness didn’t define you, it was just part of you. You had a degenerative illness where your nervous system was slowly dying, you knew that it would shorten your lifespan and it would mean you would end up in a wheelchair, but you were determined to live life to the fullest, no matter what the future brought.
I have so many wonderful memories of you Lee, memories I will treasure for the rest of my life. My last three years at secondary school were better because of our friendship. You would often wait with me for the train home, so many wonderful memories of riding around town with you on the crossbar of my bike, or sometimes I would go home with you to wait. Every morning as soon as the train arrived at your stop, you would come and find me and we’d sit there chatting, lunch time and break time was the same.
Even when I left school we stayed in touch and I would often pop over on the train. The day I passed my driving test, your house was the first place I drove to alone to show you. You were too busy laughing at me and my 30-point-turn after I got my dad’s car stuck in your cul-de-sac to be impressed. Being able to drive certainly made it easier for us to be friends and we’d often pop out for the day shopping or to the cinema.
I had never been out of the country so with your mum’s help and along with another friend, we soon changed that and when I was 19 we went to Spain for a week on a coach trip. You quickly made friends with all the “elderly” as my daughter calls them. It was an amazing week and even the fact you needed a wheelchair by now, you didn’t let it stop you and our favourite days were the water parks and the theme park. A few years later I joined your whole family on holiday for your sister’s honeymoon. For some reason, the hotel had messed up and had us down as a married couple, which we found hilarious and spent the week calling each other husband and wife.
Yet there was never any romantic interest in our friendship, I loved you as though you were my little brother. There was also the small matter of your sexuality, it never made a difference to me, but we never spoke about it, you never actually came out and told me you were gay, but I soon worked it out. It didn’t matter to me though, you were still Lee, my best friend, and nothing would ever change that. I do wish we had spoken about it though, I wish I had told you it didn’t bother me and I hope that you knew that. You knew I had a Christian upbringing and called myself a Christian and now I wonder if you ever worried I would judge you. I didn’t, all I wanted was for you to be happy, no matter who you were with.
Then came the sad day you told me you were moving away to London and I was heartbroken. London was so far away and I worried I would never see you again. Part of me wanted you to stay, but I knew it was better for you if you went to London. London gave you more opportunities to see and do things, more hospitals for your care and the chance to go to university and learn, since you were too weak to get a job, you decided to learn instead and exercise that brain of yours.
I will never forget the week I spent with you in London, we had an amazing time. I remember being stood with you in your chair outside the cinema when Star Wars Episode 1 premiered, you knew I was obsessed with Star Wars (and Star Trek) so you made sure I could be there. The rude people in front of us made me mad when they wouldn’t let you to the front of the fence, but you took it was your usual easy grace and spent the time on my shoulders instead, just like old times! My best memory of the week, aside from finally getting to watch Star Wars, was the day I took you to the Trocadero. Back then (I don’t know what it’s like now as I haven’t been there since that day) there was only escalators, and the only way to go down, was to go all the way up first, and of course, you’re not supposed to take wheelchairs on the escalator. But we were young, we didn’t think of the consequences, only that they were stopping you from going where you wanted to go, so we ignored the warnings and went up them. However, a security guard saw us and chased us, up the escalators all the way to the top floor and then back down again. By the time we escaped the building we collapsed in a heap of laughter!
Memories like that Lee, they are what will keep me going. My memories of you and your brightly coloured hair which had my toddler nephew amazed, so amazed he couldn’t take his eyes off you! My visits with you, whether it was your mum’s, abroad or London. The days we would just up and leave for the day, wherever we wanted to go. It was always you and I together.
Of course, you moving to London changed our friendship. I settled down and started a family and you were living your own life in London and jetting around the world! You fought so hard to enjoy life, you never let your failing health stop you from doing what you wanted.
You taught me so much Lee, you taught me to live life to the fullest and not to let a debilitating illness get in the way of doing what you wanted because you never did. You opened my eyes, Lee. If it hadn’t been for you I would never have flown in a plane, never have left this country, never have learnt that an illness doesn’t define you, that you can still be whoever and whatever you want, still go wherever you want, because nothing can hold you back except you.
Your sense of humour and your outlook on life were amazing and you never let anything or anyone stop you from doing what you wanted to do. That is the lesson you taught me and that is what I will remember most, that and all the good times we had together.
I love you Lee and I will never forget my little brother from another mother!!!
Sleep tight Lee and shine like the star you always were!