Maundy/Holy Thursday. Different thoughts, issues, dilemmas scrummage through this brain of mine. The comforting thought is that even Jesus, Son of Man, battled with vulnerability – “take this cup away from me” – the fear, the anguish, the despair. Then, again I think of those He called friends, those He asked them to keep watch with Him. They failed Him even in that. He knew death approached Him yet chose to sit down to a meal with His friends. He washed their feet. Surrounded by the Roman army, He asked Peter to lay down his sword. Confounding. And this time of the year always reminds me of traditions I grew up with. Easter was more special than Christmas to us Eastern Orthodox Christians. From Wikipedia:

  • In Kerala, a state in south India where Saint Thomas Christians or Nasranis are in high population, this day is observed with great reverence. This day is called as Pesaha, a Malayalam word derived from the Aramaic or Hebrew word for Passover – Pasha or Pesah – commemorating the last supper of Jesus Christ during Passover in Jerusalem. This is also a state wide declared public holiday by the Government of Kerala. The tradition of consuming Pesaha appam or Indariyappam after the church service is observed by the entire Nasrani people till this day. Special long services followed by Holy Qurbana are conducted during the Pesaha eve or at mid-night till morning in the Syrian Christian churches. The Saint Thomas Christians or Nasranis are living all over the world including United States. They also celebrate this day as ‘Pesaha Vyazhashchya’ (Maundy Thursday) by having Holy Communion services in the parishes by following the liturgy of the respective denominations from Kerala.

To those of us who deal with issues of health, that Gethsemane night is so familiar. Each ‘close-call’ becomes one too close and leaves you wondering, is the next one ‘the’ one? I may have passed out five hundred times before but what if this one is the one to end it all?  Having been through it five hundred times does not make it any less scarier. On the ‘good’ days, we wake up so motivated because we actually got to sleep, and feel we can tackle the world. Here we come to get things done, world! Woohoo! Lists written out, plan of action in place. As you get done feeding your pet, and having a bite yourself, the all too familiar pain begins. You barely hear anything because the sound of your heart pounding inside your rib cage drowns out almost everything. You push it away. Ignore it and it won’t be, right? Within minutes, the pain overwhelms, bores into the very depths of you. You double over the kitchen sink or stumble your way back from the front door, the car garage or the bus stop. You have no choice but to abandon those fabulous plans in lieu of finding relief through pain medications, topical balms – something, anything – and literally not moving until and if the pain eases.

When situations crank up into high gear, as emotions battle with physical pain, your mind goes blank. In our circles, it is known as brain fog. You see the other person in front of you, talking, moving their hands. You hear bits of it, and there are moments when those few words that do get through your dysfunctioning brain. The realisation of how you are not mentally the person you used to be is enough to crush your spirit. You question why even begin to believe in hope? And to what end? Why believe in baby kisses, rainbow colours, love’s touch or the good in humanity? If you are a burden and an albatross to your loved ones, a constant worry upon another – why doesn’t God, who gave you this cup to drink of, just bring your Judas into the picture and end it? Why the prolonging? What is it that we have to prove after being proved to be burdensome? We’ve been rendered useless, at times without any respect to the very fact we are still human beings. We may not have won awards; we may not have medals around our necks, we may not have been able to finish our degrees; we no longer are social – not because we do not want to, but because even the sheer work of getting dressed, looking presentable and walking out that door is enormous effort. Then the effort, strength and focus we need to actually function in a social setting. We may just be a shadow of who we used to be in the past; does that automatically reduce us into a shunned fringe of society? Have we become the lepers of society? Are we now ‘unproductive members of society’? Have we become moochers? But aren’t we still the work of God?! We are still ones made in His own image – Imago Dei. Aren’t we?

Then the days when everything goes hyper-bloatified come upon you: nothing fits, not your clothes, not your wedding ring. Or when you catch a virus and it tail-spins you into a crisis, as your body shuts itself down and you are all alone, with your cat watching your every belabored move, trying to soothe you by licking your tears. That act of simple, pure compassion from a beast breaks you into pieces.

You crack open that pill bottle again and triple dose yourself to stop the crisis. And you pray. You beg to get through this. You swear not to complain about anything again. Your legs begin to go numb. Your hands shake involuntarily. You mumble gibberish, saliva dripping down the side of your mouth. In your hallucinated mind, you see Mother Mary reach her hand out to you. Tears flow..’as I walk through the valley of the shadow of death, your rod and your staff, they comfort me.’ What and where are my rod, my staff? Shepherds use them to guide and protect their sheep. I found my staff in the listening ear of a handful of friends; my rod, the friends I can lean on during these times, reaching out to grab me as I sink into the quicksand of fear. Yet, I myself am now hesitant to reach out. In the fourteen years of living in the US, I changed. I have learnt that many say the right words but hope like heck you don’t call them on it. So, I learn to make do. A pot of rice goes a long way. On good days, I make a few dishes to last awhile as I ration them out and freeze some for ease of use during a tough spot. I’ve learnt to recognise when a fainting spell is about to happen and find a safe spot before it hits me, even if it’s sliding down to the floor of the kitchen, with a kitchen towel rolled up under my head. Once the beginnings of an Addison’s crisis rears it’s head, I make sure the emergency syringe and vial is next to me and I alert someone about it. And make sure my Medic Alert bracelet in on.

There is of course, the issue of depression which haunts us all. Unlike terminal illness where, as horrid as it is, you are given a timeline, a gauge of when, how and what, most with chronic, rare illness are not given that luxury. You are in a constant state of guessing.  With Addison’s and Dercum’s Disease, alongside other Rare Diseases, they can’t really tell you much and that uncertainty eventually becomes our undoing. Many suffer not just the trauma of the myriad of ways the illness/es affect them physically but also the shaming they endure in doctors and physicians’ offices where they are usually told to get off their behinds, eat healthy and exercise. No explanation given about why there are lumps we can all feel and why they cause such a searing, burning pain or why our skin looks the way it does, but instead are ridiculed. Not all of us with Dercum’s are overweight. In fact however, most, if not all, DD-ers cannot exercise because of the lactic acid produced during and after strenuous exercise which in turn, causes more lipoma growth. Those who can, do water exercises. Eventually, we get immobile due to lipomas growing around, on top of and inside muscles, tendons and organs in the body. Pleasurable tasks or activities become a pain, in more ways than one. Once immobile and homebound, we depend on charity. Charity of heart and of will. Many get food delivered by services like Meals on Wheels. By this stage, we become known as shut ins. Many shut-ins live alone. The depression caused by the illnesses contribute to family members and friends keeping a distance and sadly, dropping completely out of our lives. Ironically, at a time when we need them the most. Some of us DD-ers do not show any outward signs of those pesky lipomas/tumors clustering all up and down our lymphatic system and wherever else they so choose to grow. We look ‘normal’. Yet, there are so many times when we suck in the pain, bite our lips as pain sears through a particular spot in our body and to you outsiders, we seem just fine. If you see us with a glazed look on our faces, we are going through some mind numbing pain and not telling you about it.

Maybe it is our cup to drink of because He who loves us knows the strength that lies within us. He knows how we will find one another, build our own communities amongst those who will completely understand what you say even if what you’ve written is pseudo-legible. It perhaps is our cup to share with others who come after us what we’ve learnt about this illness. To soothe another’s fevered soul, to reassure that we can do this together. How the older ones, like our beloved Grandma Sylvia, who encouraged hundreds around the world just by ‘being’ there for so many in forums. She lies in a hospice now, slowly losing her battle while cards and letters flood her Ohio care center from all over the world, from Australia to the United Kingdom. As we drink of this cup, with each sip, the notion of life – all the knotted, tangled, disjointed but beautiful mess that it is – is slowly understood. It is never the quantity of life, it is indeed in the quality.

I recently heard an uncouth person remark, ‘oh how I wish I too could lounge around all day and not worry about working!’ Really?! Feel free to trade places with me, dude. I really would absolutely LOVE to see you handle half the pain I go through, Mr./Miss Wussy-oh-no-I’ve-got-the-flu-imma-gonna-die-crybaby!! If you are an artist, I want to see you produce pieces with constantly shaking fingers and hands that jerk around. Same goes to chefs, writers, musicians. Show me a person who can walk or run while their legs uncontrollably twitch. Show me someone in the tech industry who can code while your head suddenly jerks up or your fingers cram up looking more like a made up creature’s, you’re lost for breath and yet, you keep on coding.

Not one of us wished we would be given this cup. But it is ours to partake, ‘no return with receipt by thirty days if unsatisfactory’. There have been, are and will be times, certainly and without a doubt, when we fail. Fail miserably. When our veneer of keeping it together cracks and you see the fugly cry. When we hold on to your hand so tightly, it may break the circulation in your said hand – sorry! Know that we cannot keep it together all the time, we are human. We are scared. When we are gasping for air, fear overtakes our minds and we reach out for another’s touch, a hand to hold on to. You see, it is not the pain that gives us the greatest fear. It is the thought of leaving here, this little patch of land, alone.

[image via]

2 thoughts on “The Known Unknown

  1. Anon says:

    Thank you.

  2. So well, have you described the plight of so many of us, who bear our pain in the face of discrimination from the very health care system that is supposed to help. I live alone, and doubt anyone could ever want “this”, the reality of my physical and mental health, which earned me the nickname, Taz….. after the tasmanian devil! It is in our finding one another, that we are building a force to be reconned with. We may not see change in our lifetime, but many of us take up the activist torch, and fight for our personal right to have quality care, and zero incredulity about our very rare disease. Even more, we fight for the generations of our children and their children, that they may not have to carry such a heavy burden. ❤

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