You've been a strange year.
In 2017 I've been at an all time emotional low and felt like my life was destined to be rotten. That I was rotten.
And I'm about to host a party where over 30 people I didn't even know 5 months ago are coming to celebrate moving into 2018.
Who knows what the next year will bring but this year has proven I am a warrior.
Happy New Year.
My husband and I binge watched a harrowing TV series this week. In it hugs were mentioned, used and perceived in various ways. It had to be deliberate. A hug, so innocent and powerful, and creepy.
It's only a few years old but already dated.
Hugs for boys and hugs for girls.
Hugs for comfort.
Hugs for memory.
Hugs for plot.
And as I watched, crying silently and feeling the closeness of grief my husband asked why I watch if it makes me depressed.
"It doesn't make me depressed."
"Wrong word."
"It pulls up the saddnes. I feel sad."
And a moment of truth sounded.
"I'm this close to saddnes all the time."
And unsaid... That's why I have to keep busy, that's why this helps. It's controlled.
And the hugs got to me. And another penny dropped.
My dad can't hug me. I don't remember the last time we did and when he could.
We hug him. Gently and carefully because it can physically hurt him. This fucking disease has stopped my hugs with my dad.
How do you write about them?
My boys, the ones who got mixed up in it all.
One definitely missing and one definitely dead. My boys.
I wish I was still able to try and be part of a solution. But what a joke. I've got more chance of saving Malawi.
I think of them and I worry about them.
Here I can do nothing.
My boys.
The panic has subsided, a problem shared! The pins and needles isn't daily and most likely more about a stiff neck due to exercise. But I'm still a bit worried. The NHS feels very far away.
I haven't had a reply from anyone about MRI scans here and yesterday a colleague was complaining about the terrible insurance we have.
I am good at pushing this all to one side. My significant other is the world champion.
I'm considering applying for a job. I'm unsure if I should. The current lack of work stress is nice. This would potentially change that.
But VHL has its own way of making things stressful and for the last few days I've kept that all to myself. Until tonight. Tonight I confessed.
In the safety of his arms and while we were being honest I told him.
I have a new symptom. I'm scared. I want to be in the safety of home. It's not my imagination. This could be serious. This could fuck everything up.
And I cried.
Then we talked strategy.
Then we looked up neurologists in Malawi.
Then we looked into the medical insurance.
And then we had a beer.
Who needs the use of their arms?
Me, me, I do. *puts hand up in the air.
I'm not going to post this straight away. But I can't sleep.
I've let someone I care tremendously about know this blog exists and he's reading it.
I can't get to sleep for all sorts of reasons but it started because I drank too much and I miss my brother.
My daughter was asking about him today.
I can't know him anymore. He's almost been dead as long as he was alive but as his little sister, well, that passed long ago.
He knew me before I knew me.
He'd seen and understood what my feet were long before I stood on them.
He shaped me without intending to. He was my big brother.
I wonder if I seek that gap out.
And I'm sad. I miss who he could have been.
A simple question. Because I'm a to be. No matter what. I've considered the 'not to be' talked my way into the who would hurt. How should I do it. That was before my brother died.
You'd have to be the most heartless person in existence to do that to your parent's twice.
No, I keep on with the to be.
Despite the agony.
A common dad joke, anything to do with hearing and my dad would always say, Pardon?
He can't hear at the moment.
Pardon?
Yes, you heard me. He can't hear. No hearing. Deaf.
Says he'll learn sign language.
I guess we all will too.
It's not clear why he is deaf. Old age, the gamma knife surgery, wax...
The hardest thing is that one of his all time joys is listening to music. His life is already so limited. Watching a film, listening to music, hearing. This really isn't fair.
This hash tag has come at a time when I am strong enough to own it. Oddly having just experienced another incident. A drunk old man. The shock was such that I froze and I found myself right back to the self blame, it's what I do that makes these things happen.
I was too nice to him
I didn't say no
I didn't object to his obviously flirty behaviour the first time I met him, I smiled
But the impact of him grabbing my face and kissing me on the lips and then later grabbing me again and kissing my neck was fear. When I got home to the safety of my husband I cried and cried.
My list is long and as I read other stories I recalled so many more.
They often only last 5 seconds, the cat calling. If you don't smile it's normally followed up with a 'bitch' or other insult.
"Smile sweetheart" just as creepy
Then the slightly longer, having your neck massaged by a man you barely know. Most memorable at a wedding
Being touched when you're pregnant, like you're public property (women do this too but most women ask)
Being grabbed by two men while another shoved his head in my cleavage.
Bum grabbing, very common in pubs and clubs
Thighs felt
Being given drink after drink, tipping them away, saying no... Being walked home, trying to kiss me despite saying no... More than once.
Being touched on the vagina while being given a piggyback
Being raped
And more
Seems VHL isn't the only thing warriors fight.
The man I knew as my dad as a child has long gone.
For a while a shell existed where he has been.
I think though that this new dad is really rather wonderful (most of the time)
He, while strapped to an expert, jumped out of a plane two days ago. Lost a converse trainer but enjoyed it.
Why? Why not.
I explained to a new, potential friend that he started really trying again when he saw that I could give up.
I was very close.
That month felt endless.
I knew I could be a shell too.
I have it in me.
But I was saved and I live again.
So does he.
It has to be these big, larger than the disease, events.
He can't dance, so he flies.
I love my daughter, she is our surprise and delight.
I wanted more, I don't admit that often. No point.
But I get a pang of jealousy when I see the bundle of happy faces in pictures or in real life. I know it would be harder but I wanted a noisy family. We're a very controlled and happy 3. The magic number.
It's on my mind that even if I were to have more it's such a reckless thing to do. I'm almost 40. I'm diseased. Yesterday my husband almost didn't get the condom on in time.
I feel sad that it was the fear of the health consequences that have left me in fear and a secret part of me, ever so slightly thinking, ah but I'd have another one. Then I push that away and cover it with the facts.
We'd have to leave here. It would be a logistical nightmare.
My little one has her first day at her new school today. She was excited when she left but a little overwhelmed by it.
The reality of us being here hit her. I could tell she was bothered by it.
Eventually she let go and cried. Real tears. She misses the familiar and her friends.
I miss mine too, I miss knowing I'm close if I need them.
To go from being in charge of so much, to now so little is strange and healthy. Yesterday I happily finished a meeting and went home, cooked, listened to my daughter read and had a relaxing early night. I've read books, done a bit of prep but just enough for now.
The internet is so slow there isn't really anything else to do.
It's surprising but the lack of stress and tension is the best part of this change.
There is some, but that's so much more about where we live and getting used to that, but once we are, well time will tell.
So today I go off to be a new member of staff, not in charge of anyone really. Just the students and I'm told they are a delight.
Freedom from the last year and a chance to start again. I'm privileged in so many ways.
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