Behind the Scenes – Things people don’t get to see

My typical morning as I stir from my sleep… after the bombardment of undesirable dreams and thoughts is.. “What day is today?” Every morning I would ask myself that question so that I could ‘go through’ my calendar in my brain if I have something up for that day. Some days I can’t remember what day it is, then I’ll flip over to check on my handphone. On worse days however, after looking at my calendar I would still not be able to relate the calendar and today. People don’t understand what this means.. and err, neither do I – cause I don’t relate. I have 3 appointments made for the same day, same time and after looking at the calendar or time and still think I am doing ok with schedules! I will realise this when I “wake up” from that zone.

My morning coffees has been reduced to a 3 in 1 packs so that I don’t have to do much about fixing a cuppa. Put on the kettle, bring the cup and teaspoon, cut the packet, drop the contents. Think… “hmm… what shall I have for breakfast since coffee is now out of the way”. Before you have disabilities, you never have to think about how many steps and action you put in to get just one thing done. It’s always done in a “jiffy”. We live in a very fast paced generation. Making drinks became a chore. Not only it’s a chore.. it’s a chore, chore.

I have to put 3 ingredients into a cup, which means.. I have to bend 3 times and pick up 3 items from the drawers. Unscrew 3 containers. Scoop more than a couple of teaspoons.. with high chances of spilling at least some of it’s content during that movement, which I would have to clean up as soon as I am done with the cup – every morning. Another trip to the sink. This is just coffee. I cook sometimes, well most of the time. I can only manage for myself. You would not see the rice all over the floor I swept up, the vegetables that keep flipping on the floor which sometimes, the dog would happily enjoy. Yes, by the time I am done in the kitchen, it would have been water spillage, food spillage, and some mess here and there. I can’t keep my kitchen as neat I would’ve liked to nowadays. I probably need to lie down for awhile and tackle it a couple of hours later. No one would know anyways. By the time anyone’s home.. it is back to normal. And the 3 in 1 coffee is hurting my tummy now. Maybe I should just drink my coffee black.

So now before I tackle anything… even a recipe, if it had a lot of steps in it (not the way you see the steps, but the way I see the inconveniences) like taking out a blender would mean washing up 3 parts of the equipment, I’ll see if I could cope. When I began the rehabilitation process, I started with the garden. I found my energy, my joy among the flowers. I found new friends. At that time, I had people around me to help out. Someone was doing the cooking, or weeding and watering bulk of the garden. I found that I could only take on, one thing for the day. If I did some gardening, I would not be able to do anymore chores like cooking.

As I continue to press on, I now cook for myself weekly meals. Since I could only do one thing a day, I made a ‘cooking day’. That day, I would have my pressure cooker cooking something, the oven with 1 or 2 choices of meat, the steamer doing it’s thing and carbs enough for at least 4-5 meals. I also have to chopped up most veggies and have them stored in freezer. On actual eating days, I only have to go to the fridge, pick up my food and ‘DING’ reheat. So that my energy can be spent somewhere else instead of cooking 2 meals.

What you don’t see is, not only the mistakes, spillages on the floor, on my clothes but the amount of time I spend laying down. My back have to be constantly supported or rested in between. It’s not only the physical activities that affects it, but also the mental. Anything that stresses the brain – like having to think a whole lot of information, processes or changes in schedules, the body will stiffen up and goes into a knot and pain. Sometimes it takes hours to relax it, as I no longer want to depend on pain killers. In the initial stages of rehab, I could do a lot more than now, because I realised I not only had help, I was also on medication to relief the pain.

Last year I started to reorganise myself since I lost all of my helps (People can only be with you on this journey for so long) Initially it frustrated me so much because I wanted things done, and I couldn’t do it. So both the physical and mental brought me really low. During the adjustment period, I learned to embrace my incapacities, limitations and do only what I can. It was painful, but necessary. By now, people expected that I would be ok and back to normalcy. It’s been 4 years. I can tell you, it hurts me more than it frustrates you. People want to see me back on my feet and ‘run’ with them. I can’t. I can’t even join you because I am much slower. I can try to do the same thing as you do, but it’ll just take longer and probably a different route. You don’t know that there are times I try to run with you but I ended up going home with a pain and painkillers. You don’t know that after running with you that one day, I have been in bed for 3 days. You don’t know that I couldn’t even pick myself up and eat, because I don’t want to mess up the kitchen I couldn’t clean after. I am tired of making up excuses. So, I just don’t join you. I ended up losing friends and people around me. I have learned to accept it.

I do the things I like now. Creativity brings me to a place of calmness and excitement. Something new all the time. My garden is no longer a place of completion, but a place of growth and transitions. Through it, I learned faithfulness – to water them daily, feed them, prune them. I enjoy some friendships that allows me the space to express myself instead of being on their schedules. I no longer try to live up to anyone’s expectation not even myself. I laugh at all my mistakes. I thought I bought chickpeas to make hummus, came home and after admiring the pack for sometime, found that I had bought skinless hazelnuts!! (only realised it when i read the packet) Okayyys, guess I am eating hazelnuts afterall…

This week, having not done much.. no artwork, no cooking, no gardening.. yet my back is hurting and my legs have recently began “shivering” like going into a limbo.. hmmm….

Let’s see. Despite all these inabilities I have to deal with, life must go on the best you can do it.

❤ mamajenn