Transverse Myelitis & Me, With A New Addition!

That is a big question and one I feel needs addressing, not just for me but for everyone going through a tough emotional time. 

How many times have you crossed over the road to avoid having to talk to someone you know who has been through a traumatic time?

How many times have you avoided eye contact with someone because you don’t know what to say with the knowledge they are having a tough time?

How many times have you skipped past a person’s number in you contact list because you think they wont want to join you and others on a night out?

Have you thought how these actions may be perceived by those going through their nightmare? How they may need some normality and a chat about nonsense? 

Since I fell ill 2 years ago I’ve noticed happening more and more frequently.

When I got my first diagnosis and was in hospital for 4 months I noticed that the number of calls and visitors started to dwindle away during that time. By the time I was discharged, with my new mode of transport  (my wheelchair) I realised that I was only being contacted by the same 2 or 3 people who had been there for me since day 1.

Over the 2 year period between the admission and now I became very isolated, I put my hands up and accept that’s how I had become, despite me asking people if they wanted to pop over for a cuppa/coffee and a chat. I noticed people would make promises of ‘ Im busy this week but one day next week’ – next week has never come and it’s really knocked my confidence and made me feel like I have no worth.

Since my admission in October I’ve again had very few calls, messages and visits and it’s made my days very long and at times have felt very lonely.

I know that people have families, work, extra activities etc but when you see on social media that the people who promised to pop in for a cuppa have gone out with other friends you’ve invited round as well, it makes you question just how much you are valued as a friend and an human being. 

When Ive asked friends if there is a reason they dont come round, avoid eye contact in the street or on the school run, all I seem to be told is 

‘I don’t know what to say to you’ 

‘I can’t handle it’

‘I didn’t think you’d want to join us’   

I want to address these few statements in particular, not just from my point of view but from others I’ve spoken to who have been through various different crisis 

1. Not knowing what to say is a very normal and typical response from people when they are face to face with someone going through some of the hardest times in their lives. Heck I’ve had times when I’ve not known what to say to a friend in truly sad/life changing times but Ive acknowledged the fact that there is never the right or wrong thing to say and actually all people want, me included, is to talk about anything but the situation. I love hearing how a friend is getting on in their new job or how the kids are doing in their new school or even less meaningful discussing the latest celebrity gossip and soap news. Simple chit chat makes me feel involved, valued and I love a good old gossip. It makes my problems drift away for a bit and makes me feel relaxed.

2. When ive challenged people before about why they’ve been avoiding me ove had the statement ‘I can’t handle it’s thrown at me and it’s never made me feel so upset. In my opinion myself and my family members are the ones struggling to handle what’s happened and we dont have time or the energy to worry about whether others can ‘handle it. You don’t have to wake up to it every morning and face it all day long. You don’t have to hold yourself together for your families sake and try and support them. Your life hasn’t changed, you can carry on with your every day life knowing you did your best that day. 

Personally I wake up each day and worry about how I can take pressure off of my husband and children by being as independent as possible yet knowing I need their help with standard every day tasks, I lie in bed worrying each night abouy whether i could have tried any harder in my therapy or could have done something differently. I’m the one that has to handle it not you and I admit I struggle every day to do that.

3.  I’ve been told so many times in the past few years ‘I wanted to invite you but I didn’t think you’d want to join us.’ What on earth made you think that? Is it not my place to say whether I’d like to join you for a meal or attend a birthday party for your child with my children? Do you not give your other friends the option as to whether they attend or not? So why not me? Just because I’m in a wheelchair doesn’t stop me from joining you in a restaurant to celebrate a birthday. It’s my legs that don’t work not my mouth or my arms. I do still have a voice and as I’m told rather frequently it can be rather loud at times!!

I just want people to treat me like any other person. I wish I could turn back time and stop what caused tbis but i can’t but that doesn’t mean I deserve to be treated any differently to your other friends.

It makes me feel less valued and after years of being there for others I find it upsetting and hard that others don’t want to be there for me.

I know there are people who fully agree with me and there are others that won’t but i wanted to put it out there that we all just want to be treated as equals and feel appreciated and valued. Do we not all deserve that in life? 

So all I ask is that when you say to someone you’d love to join them for a cuppa or coffee please make sure you do – there is plenty of gossip to go around out there! 

My final thing to say is please don’t cross the road or avoid eye contact with someone for fear of not knowing what to say. A hi and how are you won’t automatically lead into all a person’s problems but will most likely make their day that someone has acknowledged them.

Right time to get off my ramped soap box and locate my cup of tea 

TTFN