Consequence of a Life Without Pain..!

'Consequence of a Life Without Pain..!' - Well, that's a confusing title isn't it..? If you're someone who's read a fair portion of my blog, then confusing it should be. Yet that statement isn't some smart word play, it's just as it says. While I have been whining a lot about feeling pain here and there in my body, all the pains I speak about, the physical ones, are confined to my upper body. It's either my back, or abdomen, etc. That is because I couldn't feel my lower body. I couldn't feel it then, I can't feel it now. If you slap my feet, it wouldn't hurt. If you pinch my thighs, you'd get no reaction. If you pour boiling water over my legs, and if I'm not looking at what happened, I wouldn't even notice it. That's the present picture. That's how things have been since that fateful day over two years ago..

As I injured my spinal cord, I could neither move nor feel my legs. But surely the latter isn't as big a problem as the former, right..? I mean, it's a problem that I can't walk or I can't move myself around easily. But why is it a problem that I can't feel such pains..? Amidst all the troubles I've had to go through, I should consider it as a blessing that I feel no pain in my lower body. At least that's what I subconsciously thought. But it wasn't so. And I learnt this the hard way. 

Pain, no matter how much you hate it, serves a purpose in our lives. Pain is never the problem. Pain is always the symptom of the problem. If you take your hand too close to a flame, the sting you get is an indication that you are harming your skin. If you pull back, you're spared. If you don't heed, you suffer more damage. That is the purpose of pain. Along with the ability to use my legs, that was what I lost due to the spinal injury. I lost the ability to feel pain.

Having gone through rehabilitation, and having lived two years this way, I now know what are the problems that can arise due to the lack of pain. But when I came back home from the hospital, I knew very little. And I didn't know about one of the most important thing that any person with a spinal injury must know about. Pressure ulcers..! They're also called as pressure sores. I had heard this term even before my accident. Older people, specially ones who are bed ridden, are usually troubled by these sores. Never in my life have I imagined that I could be challenged by this at such a young age.

Pressure Sores 101: Direct pressure is something that can harm our skin when it is applied for an extended period of time. Under pressure, our skin and underlying tissues act like a sponge that is squeezed. The blood that fills these tissues are pushed out and fresh blood coming in through the arteries cannot enter these tissues. Since blood is the vehicle that carries oxygen, the lack of flow deprives the tissues and the cells it is made up of of this basic necessity. Skin that is in good health will not break down immediately, it can sustain itself without O2. But only for a short duration.

Now when I say direct pressure, the immediate mental imagery is of something heavy or forceful pressing against you, like a weighty shopping bag on your lap perhaps. That also can be pressure that could harm you if it's placed like that for a long long time. But direct pressure also includes the pressure your skin and underlying tissues bear under your own body weight when you're doing simple talks like lying down or sitting in one place. How long do you think you can just sit still in one place..? If I was asked this question before my fall, I would've said perhaps two hours, or maybe an extra half hour max. You might claim that you could for longer. But both our claims are actually not possible.. Not without harming ourselves..

Our bodies are such complex machines, “fearfully and wonderfully made” by God. We are wired in such a way that much of the vital actions are done automatically. For instance, have you ever noticed how while sitting in a place for long hours, let's say while listening to a lecture, you have to lean forward and backward and from side to side from time to time..? Or when you're lying in bed at night, finding it hard to fall asleep, have you noticed how you turn from side to side frequently..? All these actions are in fact simple tasks that prevent the development of pressure sores. 

When you lean to and fro while sitting, you're shifting the weight of your body from one side of your bottom to the other. This seemingly random act allows blood to flow to places that have been deprived of O2 for a considerable length of time. Subconsciously you're taking note of the increasing pain in those areas and also taking the necessary precautions. Shifting from side to side at night also can be explained in a similar way..

So in essence, the pain (or discomfort) a normal person feels saves him/her each day from a very severe medical condition that could pose multiple health risks, even without their knowing. 

Now, at this moment, when I think of all this, it seems so obvious. But as we came back from the hospital and we were on our own, I hardly gave a thought to all this. Of course, we didn't have a shortage of things to worry about, so this surely didn't cross our minds. Before discharge, we had direct instructions from the doctors and nurses about turning from side to side every two hours while lying down on the bed. We did that. But we received no such info about relieving pressure on your bottom by lifting your body at least an inch off the chair while sitting upright..

In fact, it's not like I sat upright only after coming back home. While I was in the ICU, I gradually started to sit up. ( It doesn't sound that big a deal, but it is. When you've been lying down for more than a week, the first few times you sit up can be quite daunting. Feeling dizzy and nauseating isn't uncommon. I guess I started with 10-15 minute sits and gradually worked up capacity to sit for a whole six hours..) As I sat for hours together, I never once did a push up while seated ( and in my weakened state I couldn't have either ), nor did anyone else lift me up. 

In the genuine defence of the nurses who looked after me ( all of whom took the greatest of interest in my well being ), they wouldn't have looked after many people with paraplegia. Since most of my internal organs had been affected by the accident, I could fit into almost any ICU. And I was in the ICU that majorly dealt with liver ailments and paediatric care. So the specific issues of a patient with a spinal injury were overlooked perhaps..!

Anyways, I was advised to continue my sitting after going back home. And I did. Six hours was what I wanted to do. But at times, if we didn't have the man power needed to shift me from wheelchair to bed at that moment, that extended by a couple of hours. All the while, I didn't relieve the pressure. So without my knowing, the ulcer must have kept growing and growing..

Then, around a week into our home stay ( I'm not sure of the exact date, but it was around a week after I came back from the hospital ), my uncle who was a doctor did a check up on me and that was when we found out about the sore right under the left ischial bone..! We still have no idea when it started developing. We just know that when we found it, the wound was severe. My uncle was shocked and upset. I didn't really understand the magnitude of it. To me it was just a wound. It's not like I haven't been wounded before. So I expected that it will probably heal in a week or a month. But the fact that as I write this post, I still have a portion of that ulcer lingering and keeping me from sitting upright, is a testament to how severe a condition this is..

Of course, it's not like there isn't anything that can be done. Surgery is an option for most people ( yes, a lot of people who suffer from paraplegia and quadriplegia suffer with pressure sores. Most of them like me had to undergo this due to ignorance. When I went for rehabilitation I learnt that most hospitals either don't talk about sores, or don't stress the importance of avoiding them. I'm amazed how such a simple information can save the loss of time, resources and even life. If you ever come across a newly injured SCI individual, do tell them to ask their doctors about pressure sores. There's a mighty chance that their doctors might've failed to mention that except for a single line in their discharge summary. ) who have a similar wound, but it just wouldn't work for me. 

I learned from both doctors and patients during my rehabilitation that any operation to close the wound through surgery would require the most clinical of post operative care. A basic 'must-do', specially for people with ischial sores, is continually lying prone ( on your tummy ) for a period of three - four weeks. Due to other complications in my abdomen I can't lie down continuously in that position for more than a couple of hours ( even after doing regular pressure relief ). Hence, I have to wait for the body to go through its own healing cycle, or for God to miraculously intervene. And I have been waiting with hope.. 

In fact, even in this situation I have a lot to be thankful to God for. During my stay in the rehabilitation centre ( July - September '13 ), I got to see so many people who are suffering a lot more than me. Quadriplegics are people who cannot use their upper limbs in addition to all that I'm going through. And likewise, they cannot feel pain in their upper body. Such people risk developing sores in more areas of the body. They need to be even more careful. They face an even greater challenge..! I pray that The Lord will strengthen them to cope with their struggles. And I'm also thankful that He has indeed kept me better of..

By Gods grace, the wound is now mostly scar tissue on the surface. In a few months perhaps I will be able to sit and move around with lesser difficulty. Or maybe I might miraculously start walking around without any of these issues even sooner. Though I keep my requests before God in prayer, I dunno what His plan is. Yet, I know that His plan is always the best plan. In the mean time, I'm taking life one day at a time, thanking God for giving me this new lease of life that I am living, and thanking Jesus Christ, His son, for setting me free from my guilt and shame, and replacing it with peace and happiness. So what worry do I have..? None.. Life's just good..!

Homecoming!

After spending over three weeks in the hospital, it was finally time to go back home. But contrary to what one might think, I wasn't completely happy that day. Yes, I was a little glad that I could enjoy some home comforts with lesser restrictions and all that. But still, something really bothered me deep inside. I wasn't really sure if my parents could handle the extra burden that would be put in their hands..

That one thought made it so hard for me to really rejoice in the fact that I'll be going home. In the hospital there were nurses to look after my basic needs. If my health fluctuated ( as it did so easily in those initial days ) there were doctors to come immediately to take a look. If there was a need for a blood test or any other medical examination, there were facilities to do it all in an easy way. But at home we had none of these.

There were the many problems, but there was no simple solution. At that time, I didn't realise how long I would be in this condition. In my mind I thought perhaps I would be immobile for just a short time. I thought a couple of months of therapy would be enough to make my legs function again. So I imagined we could just be in the hospital, become normal again and then go back home. No one denied that out right. No one told me, "No Amos, therapy cannot make you walk again, what medical science could do, we have already done..". 

The doctors however gave another valid reason for why I could not be an in-patient for long. Hospital infections..! These infections are high risk to anyone who has been physically weakened. And since I had a spleen ( a vital organ in the body's immune system ) removed, and countless other weakening procedures, I could catch one of those infections quite easily. Treating them could be a huge headache for the doctors as some of these organisms do not respond to standard treatments. If I caught one, it could possibly be life threatening. So there was no arguing that, we just had to make do at home..

All the training and preparation my parents had was seeing the nurses help me out. Since I had spent most of my time during my hospital stay in the ICU, such occasions were limited. So I knew they weren't confident about it. I knew for certain that they had no issues with working as much as was humanly possible for my sake. In fact even when it was perfectly healthy they almost carried me in their arms for most of my life. Pampered. Yes, I was. And I had no doubts that they would continue to do the same..

Yet, I knew how frightening even the smallest of tasks would be for them, knowing that a little mistake could have a big impact on my health. We decided to arrange a home nurse and that eased some worries. ( But then, till this day we've never taken any full/part-time nursing help. It's usually mum and dad, or sometimes my sister. Occasionally when none of them could help out, my aunts or cousins have pitched in to help me with my needs.. ) 

Momentarily though, these worries would take a back seat. The staff at the hospital did something that I'll never forget all my life. That day, I wasn't really happy, I was just relieved. But what these people did changed all that. They made the day a day of celebration.

Even before anything started, I had sensed that something was going on. Slowly I started getting titbits of information about what was happening. They were going to have a cake cutting to celebrate my discharge from the hospital. I found it a bit funny and embarrassing to be honest. I've never been a guy who enjoys being the centre of attention. And in the state that I was at that time, that trait of mine hadn't changed. I just hoped it'll be done without much fuss and will be over soon.

The Cake.. 😋

But what happened was just the opposite of that. I was surprised, in a good way. Doctors, nurses and all who were associated with me in great or small ways, came to celebrate that moment. Songs were sung by a small choir. The hospital wasn't a christian establishment, but they arranged for songs with an uplifting christian message, knowing that me and my family would take strength in them. We cut the cake and shared it with each other. Those whom I had come to know on a personal level through the course of the past three weeks, came and shared some words of encouragement..

All that happened didn't ever feel like a formality, not for a second. There was some genuine love and care that I could make out. One of the doctor's who took great interest in me when I was in the ICU had a flight to catch at that time. He was keen on staying with us during the send off to the point that he could have missed his flight. He stayed, cut the cake and fed me a piece and only then did he leave. Overall, it was sweet gesture that they didn't have to show, but did. And it was something that did lift up my spirits before my long journey.

After bidding goodbye to everyone at the hospital, it was finally time to make a start. We boarded the car, it was an Innova. Our car wasn't a very spacious one, and since a bigger car would be easier for myself and for everyone travelling with me, my uncle decided to bring his. The journey began and for the first time in weeks I could see the outside world. It was refreshing to see people going about their carefree lives. Of course they might each have problems of their own, but still, they weren't worried about me, that surely was a change from all the people I interacted with in the recent past.

Sitting up for a prolonged period wasn't comfortable. But I didn't complain. Everytime I saw someone driving rash I could only think of the worst. Yet, somehow I drew courage that the Lord is looking after us. We reached home. And a welcome party was waiting for us.. For me..

Our temporary rented house ( our own was under renovation ) was on the first floor, and we didn't have a lift ( we never thought we'll ever need one ). So I was made to sit on a plastic chair with arm rests and I was carried up the stairs by my uncles and my grandmoms driver. Sounds like one of those pompous royalty from those period flicks right..? But I would've done anything to have it any other way. It was risky, not just for me, but also for all those who carried me. We couldn't have done it any other way. Thank God we were able to make it..!

I was welcomed home by my aunts and uncles, my cousin, and specially my amachi ( grand mom ) and thatha ( granddad ). I've always looked up to thatha as an upright man. He has held distinguished posts in the government. He was involved in the church ministry along side that, and after retirement he was even more active in that regard. But off late he had lost the confidence to move out of home because of his age and all the issues that come along with it. He stayed at home mostly, it was a worry for all of us. But that day he had come all the way here just to welcome me. His presence itself was quite special. 

I often feel, if you ranked people who were most devastated by my accident, I would come pretty lower in the order. People around me, the closer ones, worried more for me than myself. Mum and dad had such a hard time dealing with it. But I'm pretty sure if there's anyone who was hit the worst, it was my amachi. Till this day, nearly two years after my accident, I'm still the biggest worry of her life. She still loses sleep at night, staying awake praying and pleading for my sake. That day when I came home, she cried a little when she saw me. And I had to console her.

At home, everything was prepared before my arrival. My uncle and auntie ( mum's brother and sister ) along with my cousin and some helpers had cleaned up the house completely and re-arranged the furniture and everything else to suit my needs. So all we needed to do was get settled back in. All of us shared a wonderful dinner that night and it was nice to be back in their company.

I was showered with love that day, firstly at the hospital, and then at home from my family to show me that they were there for me. To this day my family has been my biggest source of strength and encouragement. They've supported me in every way they can and not once have they made me feel like I'm indebted to them. I can do a lot, and still fail to repay such love. 

But as great as their love for me is, even greater is the love God has shown toward me. He has used the people in my life to show me how much He loves me. If there's one thing in life that I can be sure of, it's that His love will always be the same..

“For I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, Nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.” Romans 8:38,39