Life can be strange when living with a disability, everything changes constantly, your emotions, attitudes and health status. Just like all able-bodied humans, no two people are the same and when it comes to SCI or TBI everyone’s experiences are so different. Even if we were to find two people whose lives and abilities looked super similar, we all need or want different things. So how do we encourage each other and who on this earth knows how to navigate through the awkwardness of offending when you really meant so well?
This is something I think about often, I’d say at least once a week but I will use the past number of weeks as a pretty good example of what I am trying to say. In my last post I talked about how you can be happy one minute and sad the next and I think this is also how our needs change. A few weeks ago I was feeling pretty positive about life, my capacity to get involved in it and what Andy’s health was looking like. I finished up with my counsellor after a year of almost weekly sessions. It was so needed as I was really struggling and throughout this year I have learned so much about how I cope with the fluctuating emotions of life and all of the responsibility that goes with that. I have to say that actually coming away from that felt a little strange but I knew I was OK and honestly, I was really excited for a season of feeling good! I believe that if life is hard it’s fine to say that it is and actually you need to go a little easy on yourself for a while but I’ve been feeling like I am kind of over that because nothing is going to get me down the way it has. Life is going to be good!
If you’ve been reading for a while you will know that Andy developed a wound in June 2018 and for the past 20 months we have been dealing with the consequences of that. We finally found someone who knew how to manage it in April 2019 and Andy was admitted into hospital to deal with it in June time. His consultant is amazing so with him on board it started to heal and our fears started to lift a little. So although the wound is still ongoing, it is being managed well at home by myself and we see his consultant once every 4-6 weeks. Andy was also given a new cushion in September that allowed him to get up and about again which changed everything! Never underestimate how terrible bed rest is. I was on the phone with a plastics doctor a couple of weeks ago who very accurately said “bedrest will break a man”.
So why was I on the phone with this doctor? Well on the Monday of that week Andy got into bed and I noticed his skin was really red. The first thing you do is poke it to see if it blanches (the skin turns white) and if it does we’re ok but the skin needs to rest. This happened that night but I knew it didn’t look great and the next morning it was worse. We did everything we knew to do and for the next week Andy did not leave his bed but even so, the skin broke and with it, so did I. Instantly I was back to June 2018 when I saw this cut that all the medical professionals told me wasn’t a big deal; that it would heal in a week. If I knew then what I know now, I would have gone with my instinct and not listened but here we are again and we cannot let this happen in the same way.
Trauma is a funny thing, it comes in many forms and affects everyone differently. I am definitely living with it but I think for different things. Looking at this new break in skin I am feeling all the emotions of the last 20 months fly at me at once and I described myself at the time as not functioning. I was crippled by fear and it really was as dramatic as it sounds. I went into the bathroom to shower and stood with my head against the wall just staring into space, every part of me wanted to pray but I couldn’t. I knew I needed to and then felt all the guilt that I couldn’t so I text and asked others to intercede. At this point I didn’t want to panic any family as I could be overreacting and I just simply didn’t want to ruin anyone’s day. So as Andy continued to get the help he needed from one of his personal assistants, I stood and stared with an inability to cry. I didn’t feel connected to my body but somehow I am now clean and standing in front of my Nutri Ninga, forcing myself to intake something healthy into my diet today. Frozen banana and strawberry go into the bottom of the bottle despite my increasing inability to see through my eyes that are now glazing over as my emotions come. My body begins to bend and buckle in what I can only imagine was slow motion and I begin to cry these silent tears that actually hurt my throat a lot. I can’t make a sound because I see that the kitchen door is open, too far away for me to reach and I can hear Andy is doing speech therapy exercises. I don’t want either of them to hear me crying. Andy is in bed so he can’t come to comfort me anyway, I have to be strong and this smoothie is not going to make itself.
How am I here? I’m not sure I’ve felt ever felt the need to cry out “HELP ME” quite like I do in these moments but I just signed off from my counselling, she wouldn’t mind me calling her but I need to be able to do this without her. I still can’t pray much but manage to get out “Holy Spirit heal”. Everything else that I am dealing with, pain, fear, trauma, I’ll deal with that on my own thanks. Is that my safety blanket of control? Probably.
Andy’s skin is no longer broken but still fragile and we are hoping that our efforts to avoid this have been successful. The morning after the slowest smoothie making session ever, something clicked. I needed to keep going here. I hadn’t been grocery shopping in months as I was finding it too overwhelming but my efforts to online shop normally left us with a bunch of food that wasn’t healthy and that couldn’t be eaten together. My phone call with the doctor that morning confirmed what I already knew and that was that Andy needed to be eating really healthy again and protein intake needed upped massively, thus began a weekend of me force feeding him. What do you mean you aren’t hungry, this is only your 5th meal of the day! Side note – Andy never feels hungry anymore, he just eats because he knows he needs to as he also can’t taste much! Second side note – after speaking with that doctor that morning about everything we can do to help and realising that we were almost doing every single one, he told me that we were doing a really great job and that Andrew was lucky to have a wife like me looking after him. Never underestimate how important it is to build people up and give them confidence in moments like this and really in all moments of life. It’s not going to “give them a big head” or make them “too big for their boots”, it’s simply going to allow them to replace all the negative thoughts they are having about themselves with some honest truth that they are doing a great job. I was doing a good job and we both are tackling this like champs. Our roles look different but both are equally as important. Know that if someone around you is taking care of you, just like they can’t understand your situation, you too can’t understand the responsibility and pressure on their shoulders.
Who knows how this wound healed up so quickly, was it the bed rest, the nutritional foods or the healing power of the Holy Spirit through weak prayers? We will never know that but we gotta keep it all up. Bed rest is still happening as there are still signs of pressure damage that could break down at any point and my concern is fluctuating constantly as it changes everyday. Also, there is still a good 1cm deep wound to heal on the other side. This time last year that was 5cm deep and about to expose his bone so let’s celebrate its recovery to get to this point eh?
We don’t know what people need. I had a message this month asking me if I needed anything when I was in a place where I felt really good and that I could actually be the one helping them. Should I be offended that someone is looking at my life thinking I might need help? No, it’s not pity when people want to help, it’s just love. Sometimes I want to scream we’re actually ok you know, this is just our life but then a day later I’m lying on the floor wishing I accepted. I think my point is this. You have a responsibility for the way in which people respond to you. For example, no one would have known I was going through all that, so I told them, I sent messages and those people then checked in on me. I needed that but I would never have received it if I kept quiet. It’s not enough to simply think people should be checking on you anyway because maybe they don’t know if that will offend you, next week it maybe would? Be more honest about how you are feeling and stop running yourself into the ground to hide your emotions. Those people I text didn’t do much other than check in and I hope pray, but simply by reaching out I felt less alone. That’s important and that accountability with each other is never to be underestimated.
I wrote the majority of this last week and since then I’ve felt God really gently speaking to me. I sang a song in church on Sunday with the lyrics
“God, I look to You, I won’t be overwhelmed
Give me vision to see things like You do
God I look to You, You’re where my help comes from
Give me wisdom, You know just what to do”Bethel Music
As I was singing I realised that this was not truth for my life. I often will describe myself as “overwhelmed”, I think I kind of live there but when fear comes in like it did that day I could not turn to God for help. Although I asked for prayer, I turned to people, to the tangible around me that answer me back in a way that I can easily hear and not doubt. I do not know why I do this, I’ve asked this question for a long time but really gently, on Sunday morning, God reminded me he was there. He told me that He is where my help comes from and that fear is not to overwhelm me. How do I put this into practice in my own life? You tell me! But for now I am making a real choice to welcome Him into each day and I hope that when my next test comes, that I will turn to Jesus.
“When I am afraid, I put my trust in you.” Psalm 56:3