Thursday, April 29, 2010

Experience, the Essential Educator

All day yesterday my thoughts were directed towards death and dying, the passing of my father, the intertwined lives of parents and children, the loss of a parent, grief and healing...all thoughts precipitated by the passing of my friends' mother after a battle with cancer. I had planned to go to her wake last night, and all day my thoughts gravitated towards these seemingly morbid thoughts. Somehow, I didn't consider them morbid. Instead, I felt that they were necessary because I was re-experiencing the loss and grief of my own father, and in some way, identifying with the loss my friends were experiencing.

I have attended many wakes and funerals, possibly with increasing frequency as I age. I recognized that for the first time I truly apprehended what it meant to lose a parent. I knew what it felt like for a child to see their parent's body lie in a coffin. I felt the pain my friends must have felt when their parent first passed away, the shock, the finality, the closure to a period of pain and illness... I could enter into these experiences alongside my friends because I too had been through them. I said nothing about these things, but I felt them. I think it resonated with my friends, and one of them very kindly asked about my father, recognizing that his passing was still fresh for me.

And yes, it is fresh. It is hard to go to a wake and not be reminded of what I endured, thoughthe circumstances are very different. Experience helped me identify, but it also brought the past alive and I did feel pain. When I came home I found myself tearful. Tears I had held back welled up in my eyes. I thought through the parallels and the disparities between circumstances and I relived some pain, but I let it go soon enough.

Experience is useful for people who live with chronic illness educates us even as we live through it. My having surgery now allows me to identify with others who have had surgery. In the past it would have been some abstract and theoretical head knowledge of what surgery might have been like. Now it is real, visceral, concrete...I know it in my head and my heart and my guts...and of course I should...they got the chop! :)

As painful as experiencing something can be, each experience has its positive side. It can help us identify, help us empathize, help us help others who go through similar experiences. I choose to cherish my experiences then, for they go towards making me, ME. Even the "bad" experiences can be used for good if I choose to look for the good in them. I do choose, and I cherish. My experiences are an essential educator that have taught me how to be a better person. I am not afraid of what experiences may come. I embrace them.

Thanks for reading!


Wednesday, April 28, 2010

Defying Being Defined by Disease

I am more than the sum of my bodily parts. I am more than the soul that inhabits my body. I am a part of something bigger than myself. I am part of humanity. That sea of bodies and their incumbent souls that moves upon this earth as would many millions of ants upon the sand.

And like the ants that swarm about, each one similar and yet uniquely different, so too in this sea of people are we similar and yet not the same. Bodies that look and function the same, and yet the indwelling soul distinctly different and apart.

And unlike the ants that scurry about, each one dedicated to its own task for the survival of the colony, we do not live and work for the survival, the existence or even the betterment of humanity. We live pretty much for ourselves.

Living for myself in my own little world takes me away from my fellow brethren with whom I have an unbreakable bond. Living for myself means I am isolated from that which makes me whole. Living for myself cripples my soul.

And yet to live for others requires energy. Energy to listen, to talk, to visit, to be with in silence...the kind of energy that is life giving and yet draining. It gives life to those who receive it and drains those who give it. I do not have that energy these days. I am drained simply by being.

To live for others requires love. Love to put aside one's own desires and noisy needs and to listen to others speak of their own struggles and troubles. In giving this love one receives love also, and life is enriched. I do not have that love because often times I am drowning in my own needs and struggles and troubles.

A life lived for others demands an openness and strength of heart. A heart that gives and also receives. A heart that feels the pain of others but can bear that pain without falling apart itself. I do not have that heart. I feel too deeply, fall apart too easily, the sorrows of this world affect me to my core. I build walls around my heart to keep out the pain and in so doing, my brothers and sisters too.

But this was not always so. In a not so distant past I lived more freely for others. I enjoyed nothing more. I found meaning in a life of service and in giving of myself. But Crohn's Disease changed all that. I now find it all too much. Exhaustion, and the side effects of medication make it difficult for me to function some days, so much so that I have had to draw a line around the few that I can live for, and live with, and that understand me and what I am going through, and for me that is enough.

Is my life, my very existence, being defined by disease? I ask myself this often. I have changed in many ways since my illness, but I have also aged, and how many of us have the energy we had at 40 that we once had at 20? I have had 4 kids, and how many Mums out there can find the energy or time to do much for others, when really being there for family takes everything out of us?

I defy being defined by disease. Yes, it is a big part of my life. Yes, not a single day passes when I don't think about it. Yes, I am changed. But I embrace myself. This new me isn't a "bad" me. It's a focussed me. One who has recognized her limitations and is honest to herself in saying that she cannot be all things to all people, just some things to a very few people.

I am more than the sum of all my bodily parts, diseased or otherwise. I am more than my soul trapped in a decaying body. I belong to the sea that is humanity, and yet within that sea, I am a secret cove, where people who know how to find me may find refuge and rest, and peace from the storms of life...a listening ear, a sympathetic and empathetic heart, laughter and tears, and whatever else I can offer.

If you're reading this, well, you've found me :)

Thanks for reading!


Tuesday, April 27, 2010

Collateral Damage

Today was a tough day for me. I am adjusting my medications, weaning off steroids and increasing immuno-suppressants to keep me in remission from Crohn's after a very successful surgery. The difficulty with my medication is the side effects I need to tolerate. They can be so unbearable at times, and some days I don't feel like myself at all.

Weaning off steroids is a tough job. I am now down to a tiny dose, 5 mgs, on alternate days with the aim of stopping altogether after 4 weeks or so. I didn't take any yesterday, and so I took some today, and within hours I began to feel the effects. I already had an aching body, a headache, photo-sensitivity that hurt my eyes etc from the immuno-suppressant, and the steroids made me edgy and irritable and in no time at all I found myself the kids.

This, for me, is the hardest part of living with chronic illness - the collateral damage that happens while battling Crohn's, and in my case it happens to my kids. There was a mix up about CCA's and pick-up times, and I got 2 phone calls with my sons protesting that they couldn't find their sister...I barked and got mad because I was miles away and I didn't have a clue where she was either...but neither did they! Eventually she was found in the Music Room attending her singing class which I had forgotten all about. Oh my. Apologies issued to my dear sons.

Then there was Maths homework or rather class work to finish because my girl took her time in class, and so I got an email from the teacher and we tried doing the work. Ooops, Mama wasn't in the right mental state, and so we spiralled into a tense state of my scolding her and she tremblingly fighting off tears. Oh dear. Apologies to my daughter.

And then my youngest son wanted to watch a movie before bed time...after playing on the X-Box. There was just no time left at all. Barked at him and told him in no uncertain terms that he couldn't because he was due to go to bed. Tears and unhappiness. Oh no! Another unhappy child.

What a day! A week's unhappiness squeezed into one sad day. I found myself in tears too. I understood what I was dealing with in terms of my meds, but how could I explain that to my kids? And how unfair for them too, to have to suffer in this manner. But this is one of the realities of life with chronic illness. When the patient has a bad day, for whatever reason, be it pain, medication, depression, etc many times others around them suffer too.

There was a silver lining in the midst of eldest son showed a maturity beyond his almost 14 years. He spoke calmly to me and quoted from his life sciences class today, that scolding and shouting don't help a child learn, or respond well, and it stresses them etc, and he offered to help his sister too... I was amazed and terribly embarrassed! I knew all that, but in practice it had flown out the window, and my own child was telling me how to parent... and he was right too! I am glad I took it in the right spirit instead of brushing him off. I later made up with him too and told him how much I appreciated his wisdom.

All ended well, and tomorrow a little extra time on the X-Box will mend everything and we'll carry on as we pretty much do, in relative peace. I do hope I can get a handle on myself, despite meds or anything else. I so desperately want to be a good example to my kids, and how to be one if I bark, and scold, and dissolve into tears in this manner? Some days I comfort myself that other parents also have bad days...but then no one ever talks of them, and so I'm not too sure if I'm normal or a sad and terrible aberration on the face of planet parent. oooh drama mama alert :)

I stand back some days and I am amazed that my kids are decent and normal kids (as far as I can tell!) and I thank God for that. I thank God that He is teaching me that I am not the centre of their universe, and that despite my weaknesses and faults, which are many, my family will be alright. I pray for that often, more so than for my own personal health or gain or anything else.

I remember a book title I saw years ago that I have mentioned elsewhere in my blog, but which bears repeating here : "If Mama Ain't Happy, Ain't Nobody Happy!". Today I saw that to be true. It was real. I wasn't in control, and everyone was unhappy...thankfully Papa came home and saved the day :) Wonderful Papa who is so cool and calm and collected...I thank God for him too!

What then to do with myself and my meds and life and its stresses? I had a good cry, apologized to those involved, made restoration and have stopped hating myself. I think tomorrow might just well be a very good day. I live in hope that TOMORROW WILL BE A BETTER DAY! Maybe I should go out for awhile...wander about and be at large and burn off a bit of my edgy energy, and then come home relieved to be back and happy to see everyone...I think that's a plan! I hope it works! :)

Thanks for reading!


Monday, April 12, 2010

8 Weeks on the Road to Recovery

Two nights ago, (9th April) was the 8th week marker for me. 8 weeks post surgery on the Road to Recovery. I had been thinking about writing in my blog about my experience, and what it meant to me, but somehow I never got around to putting my many thoughts down. An old friend hoped to read about my post-op reflections, and well, I can’t disappoint a friend can I? And I do so love an audience J Here’s to you, Puni, and thanks for wanting to know!

In my last blog post I wrote about the events leading up to surgery. While the doctors pored over CT and XRay films I did my own pre-op prep. I had a haircut and waited as patiently as I could for my doc to announce the day. My heart leapt in excitement when he came by and told me all systems were go for 12th Feb. I had never felt so ready for that day. Finally!

I could barely wait. I was excited and also anxious, but more excited really. The same way I felt when I happily and cheerfully went off to have my first baby in May 1996. Having read all about it I had no clue what was in store for me, really. Just a lot of theory and no experience. I woke up early on the 12th feeling a sense of anticipation. I was told I was scheduled to be wheeled away at about 6pm, and the hours seemed to wear on.

An Aunt, Kay, came to spend time with me and to pray with me in the evening. I was very encouraged by the prayer, and I felt comforted. In fact, I felt myself drift away to a very quiet and calm place, and a peace descended on my soul. It was a truly supernatural experience for me. I was grateful for her company and her taking the time to spend about 6 hours with me, and later with my husband, while I was in surgery.

I remember being worried about what Kay and my husband would have for dinner that night while I was in surgery, and so I helped plan a really nice dinner for them. My husband had treated me to a VIP suite at a private hospital, and the menu was simply quite amazing, if one could actually eat any of it. So after consulting Kay I ordered French Onion Soup and Caesar’s Salad as entrees, and Chicken Nasi Briyani and Beef Fillet Steak for mains, Chocolate Cake and Apple Pie for dessert, and juices and tea for drinks. I was so happy that they were going to be well taken of food wise in my absence. Strange as it may seem, it gave me pleasure to know that they would be eating a hearty meal, and indeed it was very hearty!

I was in the shower when suddenly my gastro consultant came by to see me. He was leaving for Chinese New Year holidays overseas, and I was to be left in the capable hands of the surgeon, the anesthetist and the pain management team, all of whom I had met before. I rushed out to speak to him and he prayed for me too. I was deeply appreciative of his prayer. We said our goodbyes, and I told him that by the time he got back a few days later I would be running about the wards, and he’d never guess I’d had surgery. J

They came to get me early, and popped a dormicum in my hand with literally 2 sips of water in a tiny little cup. My stomach had to remain empty for surgery, but two tiny sips were okay. The dormicum was to keep me calm and help me sleep. We left the room, hubby and Kay trooping along, with me on the bed in a blue gown feeling a little naked, but happily covered in a thick white blanket. As I was being wheeled away I looked up at the ceiling lights, and thought of how in the movies they always flash by so fast. They didn’t flash by in my case as I wasn’t being rushed anywhere, and my life didn’t flash before my eyes either. I made a joke or two, kept up a smile, and tried to make eye contact with the orderly pulling my bed along, but he remained rather aloof. Must be too many patients a day to care for anyone in particular, I guess. As we reached the “No Entry” doors, I said my quick goodbyes, told hubby and Kay I would be fine, squeezed their hands and vanished as the doors closed behind me. I was glad they would have a nice dinner together but my eyes filled with tears and I was embarrassed because finally, yes, finally, the orderly looked me in the eye, but his look was so vacant I sobered up immediately, not wanting to be thought of as a baby or worse, a drama mama J.

I was wheeled to a corridor in front of yet another set of big doors which were open, and beyond were the actual operating theaters. Someone approached me and then asked me the usual questions…name, IC number, do I have dentures etc. The sort of questions they ask you almost everywhere else in the hospital ad nauseum . And then it happened…I floated away. I was completely and utterly gone. I have no idea of what happened to me after that until I woke up 4 hours later.

The surgeon had toyed with the idea of parking me in the ICU for the night for close surveillance, but after the surgery he decided I didn’t need it and I was sent back to my room where my husband and Kay were waiting. It was now past 10pm, and the surgery had taken longer than expected. I remember opening my eyes and seeing them there, and thanking them and then I drifted away in a morphine daze.

The morphine helped with pain, but made me nauseous the next day. I tried to manage with less, but it was painful. I tried switching to pethidine, but that also affected me. I had never taken these powerful drugs, so I was completely naïve to them. In the end I managed with very little morphine for a couple of days, and then switched to panadol suppositories which helped a lot with far less side effects. The net effect of going off morphine early is that my guts got going earlier, I was less nauseous, I walked by the second day, and I felt better overall. I could manage the pain, though sometimes it was tough. The morphine also gave me weird dreams and I never felt rested. How could I when I was with McGyver in a science fiction movie, running across open fields and swimming with whales in the ocean? I was exhausted!

My hubby later told me that as he was driving home that first night he met the surgeon in the hospital carpark, and so they had a short chat during which he said that they had removed my appendix, my gallbladder and about 30 cm of small intestine, a lot more that we had earlier anticipated. Apparently there were 3 more strictures forming and I would have been back for surgery sooner than later if he hadn’t taken them out. I was rather shocked by the 30 cms, but I have come to accept it now as something that needed to be done.

As I had been lying in bed for so long prior to surgery, due to being hooked up to so many tubes, my muscles had become weak, and so when I began my first walk on the second day post-op I was exhausted by a short stroll. The nurses had to help me as I had a catheter and urine bag, a drip for meds, another line for liquid feeding (TNP), a tube and bottles for wound drainage and a very sore wound. Basically I clanked about the ward like some Frankensteinian creation…I scared myself!

I did pause and glare for dramatic effect at some visitors next door who seemed to think nothing of standing outside my closed door talking at the top of their voices, and crowding around the doorway of their VIP patient, the Governor of some SEA country…it was so rude and so annoying. My glare and my state was enough to scare some of them…they behaved much better afterwards. J

I waited in anticipation of tubes being removed and the first one to go was the naso-gastric tube, a very annoying tube shoved down my nose and into my stomach to help drain liquids. Green hideous stuff came out every now and then and phlegm too because it is common to have some post-op. I hated that tube because my nose got sore, my throat hurt from it, and the hideous, bilious liquids nauseated me every time the nurses came to suction the bag and empty it.

My surgeon came by and on the 3rd day decided to remove it much to my joy. I wanted the nurses to do it gently, but he said no need, he would do it, and in 2 quick pulls it was out, much to my relief. It was painlessly removed and I began to feel a little less like a freak show.

Later that day the catheter came out and I was relieved because I had a feeling that my bladder had been bursting for days, but the nurses said that my liquid input was equal to liquid output and so I was doing fine. I was tormented by lower back pain because of this full feeling, and when the catheter came out I was so glad to be off to the toilet even though it meant a lot more walking. The nurses were worried whether I would be able to pee again after the catheter…but I had no problems at all. Apparently some patients do have trouble and it takes them a while to readjust. I was relieved I was able to do it and didn’t need a bedpan or anything like that.

Eventually the central catheter line inserted into my vein had to come out as I no longer needed liquid feeding and was on clear soups. Later my wound drainage tubes would come out too, the last of my tubes. All of these were removed painlessly which amazed me because I had been under either local or general anesthesia when they had been inserted! I was relieved to be finally free of tubes and able to move more freely, but that only happened around day 6 post-op.

I recognized in myself a strong streak of independence that I had seen in my maternal Grandma who till her last days insisted on bathing herself and cooking for herself. I, too, valued my independence and found it hard to receive help from the nurses. Prior to surgery I insisted on bathing myself even though the nurses offered to help because they worried I was weak. I let them plastic wrap my left arm to keep it dry, but managed showering and hair washing myself, and I felt a sense of accomplishment every time. What tiny shreds of dignity I had left I held on to…

Post-op it was too much for me to manage a shower, and I wasn’t expected to either for the first few days. A nurse came by to offer me a wipe wash on the 3rd day, and so we navigated tubes and drip stands, the changing of the gowns, hair and teeth brushing and basically I started looking and feeling human again. Not being on morphine too much helped tremendously. The surgeon and the nurses remarked that I was doing very well, and I felt better with each passing day. I walked more each day around the ward, I glared a lot less at noisy neighbours J , I managed a walk on day 6 post-op to the hospital gardens all by myself, having done 9 rounds of the ward the day before and getting rather bored and feeling trapped.

I did not start eating till a few days after surgery, and even then I began with clear soup, and then plain porridge and some tea in the morning. My fantasy then was to have chee cheong fun, a nice yummy soft plain rice noodle dish with plum sauce, and the first time my doctor allowed me to have it…it tasted like heaven! My first real meal in over 50 days. I had it for breakfast and lunch even after I left the hospital…J I found though that immediately post-op I was not in a hurry to eat until the effects of the morphine left me completely. My surgeon was keen on testing my system, but I was reluctant and so began with clear soups for a couple of days first, culminating in chee cheong fun upon discharge from hospital.

One of the funniest things about being a gastro patient post surgery is that the surgeon was literally obsessed with whether I had passed gas…this passing of gas is the sign that the system is working. Everyday he would ask me if I had passed gas, and then the nurses asked me questions too…what colour and texture is the stool, what quantity, did you collect urine for measurement, any gas yet? A myriad of questions for me throughout the whole day. I felt like a sick baby…minus the diapers!

These sorts of things can dehumanize and can embarrass a patient, but for many patients with IBD, these issues are commonplace. They are part and parcel of everyone’s lives, just maybe a bit more so in ours. And so it was a happy occasion when gas was passed, and it was duly noted in my file, and reported back to my surgeon who was ever so pleased though he wanted to know if the nurses had heard it…fortunately on one occasion a nurse was there. Sigh. I found myself beyond embarrassment with these lovely nurses who laughed along with me and seemed to enjoy my jokes. I told them they were lovely nurses, they said I was a lovely patient… and so we all got along nicely.

I eventually overcame my embarrassment at needing help to manage a shower. I was taped and plastic wrapped in strategic places, and then I managed to shower myself but needed help getting dried and dressed. I made jokes about my lack of shapeliness, and how all the nurses looked so slim, and of course we happily blamed the four kids for my loss. Through much laughter we made our way through the embarrassing moments. Embarrassing for me but not for the nurses…they have seen it all.

There was one night nurse of whom I became very fond and I shall never forget her. She was from China, and we were able to communicate quite well. She laughed at my pathetic Mandarin, and she had a son in China, so we had a few chats about life. She saw me through a rough night, in fact the Night of the Passing of the Gas…that fateful night my digestive system woke up and the bile in my system had nowhere to go as I no longer had a gallbladder to store it and for some reason I kept having to go to the toilet.

I would ring the bell for help, she would come running, help me sit up, unplug my drips stand, wheel it and help me to the toilet, come back when I called, and she would help wash and clean me up. I just couldn’t manage doing it myself because my abdominal wound didn’t allow me to move too much. And so we formed a pattern and made many trips one night…possibly even 10 trips. She never complained, she was very kind, she helped me get over my embarrassment at requiring help, and we made a decent team.

I did break down when I was alone though…I felt overwhelmed by everything. By the big wound that seemed so scary I didn’t dare look at it, by the 4 small laparoscopic wounds that hurt but seemed tiny in comparison, by the need to ask for help for things I had always managed myself, by the loss of my dignity and privacy, by the feeling that at 42 I felt like an 80 year old invalid, by the invasion into my life of medical staff, medical procedures, by the removal of bits and parts of me, by the fear that the disease would come back and all of this would be in vain…I broke down briefly and let myself cry. But not for long. I knew deep down that what was done was done, and it was for the best. Someday soon I would eat again. Someday soon I would be normal again even if I always had scars and parts of me were gone. The essence of me would remain, or so I hoped.

But the essence of me became frail and fragile. I do not know if it is due to the surgery or the starvation prior to it or a combination of both ranging over almost 3 months…starvation, surgery, recovery. It has taken me 3 months to feel less frail. I remember desperately wanting to be discharged from hospital despite having a low grade fever…I was allowed home and would return in a few days for a check up. I desperately missed my 4 kids, and had their photos in my hospital room, and I really needed to go home to them. When I went home I felt like I was back where I belonged. It was wonderful…but after a few hours reality set in that I was on my own with a wound that was still rather fresh, 9 days old, and I didn’t know if I could bathe myself or manage the kids, and I didn’t have the nurses to help me…and I did have a mini collapse! Again, I was overwhelmed. The rest of the family left me alone to rest…but I had difficulty getting up on my own, reaching for my stuff hurt, and just the trip home had exhausted me beyond words. I was reluctant to trouble anyone, but at the same time I needed help, and on some level I was even annoyed that no one realized this… then I told myself that mine was the first experience in the family, and if I needed help I would have to spell it out clearly.

And so I did a better job at communicating my needs and getting the help I needed, and everyone was so helpful that I managed to manage…and as the weeks passed I felt stronger and stronger. My husband and the children were so kind and helpful that I was overwhelmed, not by my situation or sadness, or fear or anything except gratitude at their attitude. I asked for help and received it, and many, many times I was blessed even without my asking. At the same time, I had a network of close family and friends praying for me and I updated them daily. I was amazed at the dedication of many who kept me in prayer and in their thoughts. It made a tremendous difference to me, and to my recovery. I was told it would take 6-8 weeks to recover fully, and at 8 weeks now I can safely say I do feel quite recovered.

Physically, I feel better and the wound has healed well despite requiring two squeezing sessions with the surgeon because of fluid accumulation and slight swelling. (It’s an agony being squeezed…but very necessary to avoid infection). Emotionally, I feel better too…I can look at my wound and not feel tearful and fearful as I have earlier on. I remember thinking that I had been violated in some way…a hole made into me and things taken out. How awful the thought had been, and my knees would literally go weak at the thought of it. Now I am no longer upset by it. It is there, that’s all.

In the early weeks after surgery I remember thinking I had been silly to have been so excited about surgery, because in reality it hurt like nothing I had felt before. Even childbirth without pain relief had seemed easier to me. But as with childbirth, the pain of the post-op road to recovery tends to fade with time. If we never forget physical pain, women would never have more than one child. People would never have more than one surgery. I think that if I had to go through it all again I would be less excited but more emotionally prepared, and certainly much more aware of what to expect.

I am hoping never to need surgery again. I can now eat fairly normally, and have begun immuno-suppressant medications to keep me in remission and prevent recurrence of the Crohn’s. I do hope it works and I don’t ever need to starve again or be opened up on an operating table again. I live with side effects from the meds, and they can be depressing, but I am hoping to get used to them, and have a better quality of life, and a sense of normalcy that is more in line with the rest of the family’s, and to be able to live and do all the things I want to do. I am battling the flu now because my immune system is compromised and I catch bugs so much more easily, but I do think I will recover soon and feel better. I live in hope!

At my last appointment with my surgeon, when he said to see him in 6 months unless something cropped up earlier, I realized that I was well and truly discharged from his care. He said something to me as he looked into my eyes. He said that I had done very well through what had been a very difficult time, and a dangerous surgery. As I look back on all that has happened I realize that I have indeed done well. I have survived something dangerous and difficult and I have come out stronger. I feel it, now, at 8 weeks post-op more than ever since the surgery.

I know that I made it with the help of great healthcare professionals and the prayers and love of my family and many friends. I was very uplifted through it all, even in my darkest moments I have not felt abandoned. I am grateful to God for His care and the many manifestations of His love I have seen in the people in my life. My faith is stronger, my hope is greater, my heart is overwhelmed with gratitude. I am well and truly blessed.

Thanks for reading!