Dealing with chronic illness is a daily battle; not only physically, but also emotionally and psychologically. Many people get trapped in a negative mindset and fall into deep, consuming bouts of depression. I will forever be indebted to my family and friends who have bent over backwards to catch me and pull me back up before diving into those enticing black holes. Another trick pessimism plays on the brain of those dealing with long-term disease, is overwhelming hopelessness that, in turn, leads to complacency and premature acceptance of a future dictated by limitations. I can only attribute my excessive overachiever tendencies and tenacious drive to a higher being, because I don’t know from where else my undying motivation to get better could have come. At times, this ridiculous ambition has caused me more harm than good, as I have obsessed and over-researched in fields that don’t yet have the answers for which I am searching.

Evade depression—check. Remain hopeful—check. Never settle—check. Don’t give up—check. So far I probably seem to have it under control….WRONG. Where I stumble again and again is with deep-seated, profound GUILT. For years I have carried around a heavy conscience as a result of my rare disease. While seemingly counterintuitive, I indeed feel badly for suffering. This guilt morphs, taking on many forms. I feel regretful for the burden my sickness has placed on my family. My parents always assure me that cost is irrelevant, when your health is in question. Even so, I hate to think about the exorbitant bills accumulated through the years of appointments, tests, and treatments. I’ve gone to bed many nights in tears, utterly distraught over the feeling that I, in a sick and twisted way, did something to warrant my disease. This sentiment is amplified by no doctors’ ability to explicate the cause, origin, or trigger. I’m unable to wrap my head around the idea that I deserve to get better, when so many others who have suffered longer or harder than me, aren’t afforded that privilege. Particularly distressing, is the realization of all those younger than me, who are missing out on the beautiful childhood with which I was blessed. I simply cannot control the fact my heart bleeds for anyone in this world who has to face demons everyday.

Being here at the Paracelsus Klinik, I originally was struck hard by that extraordinary guilt. I walked around for days ashamed of how fortunate I am to be treated in such a superior setting to the hospitals around the world and even in the States. This is the epitome of “ivory tower” medicine in many regards. Through intent contemplation and purposeful meditation on the subject, I have started to move towards a more healthy perspective based in gratitude, rather than guilt.

This process was spurred by a meaningful conversation I had with our close family friend. Marie, kindly came over to my home before I left for my week long stay in the hospital before this past Christmas, in order to pray with me and preform the “laying of hands” on my head. I mentioned to Marie my strong desire to do God’s will. I have always been a “pleaser”, wanting to make everyone  around me perfectly happy. I told her with tears in my eyes, that I felt, perhaps, the tension I harbored was conflict between my ceaseless initiative to find a cure, and my possible “calling” to endure this illness indefinitely. I questioned whether I would find more peace and relief in accepting my fate and facing it gracefully. Marie immediately rejected my concern, assuring me that God wanted me to be healed. She turned to the Bible and she flipped to a psalm, which she was moved to share. The opening lines instantly resonated with me. She read, “My God, my God, why have you forsaken me?…” and proceeded through Psalm 22:1-31. It wasn’t until ten minutes later that we realized the psalm is titled: “The Prayer of an Innocent Person.” That moment was heart wrenchingly cathartic! I will forever know in the depths of my soul, that God sent Marie that day to comfort me, console me, and tell me, once and for all, that I am not to blame for my disease. Looking up Psalm 22, again tonight, in order to include with my blog post, I came across the various other titles, used in different translations of the Bible— “Plea for Deliverance from Suffering and Hostility”, “A Cry of Anguish and a Song of Praise”, “The Prayer of a Suffering Man”, “God Delivers His Suffering Servant”, “Suffering and Waiting for Deliverance”.

Each and every one reverberates through my soul. I hope that the message God has shared with me, through Marie, can in some way touch you and restore your faith in the goodness of the heavenly Being who created this magnificent world.

1 My God, my God, why have you forsaken me?
    Why are you so far from saving me, from the words of my groaning?
2 O my God, I cry by day, but you do not answer,
    and by night, but I find no rest.

3 Yet you are holy,
    enthroned on the praises of Israel.
4 In you our fathers trusted;
    they trusted, and you delivered them.
5 To you they cried and were rescued;
    in you they trusted and were not put to shame.

6 But I am a worm and not a man,
    scorned by mankind and despised by the people.
7 All who see me mock me;
    they make mouths at me; they wag their heads;
8 “He trusts in the Lord; let him deliver him;
    let him rescue him, for he delights in him!”

9 Yet you are he who took me from the womb;
    you made me trust you at my mother’s breasts.
10 On you was I cast from my birth,
    and from my mother’s womb you have been my God.
11 Be not far from me,
    for trouble is near,
    and there is none to help.

12 Many bulls encompass me;
    strong bulls of Bashan surround me;
13 they open wide their mouths at me,
    like a ravening and roaring lion.

14 I am poured out like water,
    and all my bones are out of joint;
my heart is like wax;
    it is melted within my breast;
15 my strength is dried up like a potsherd,
    and my tongue sticks to my jaws;
    you lay me in the dust of death.

16 For dogs encompass me;
    a company of evildoers encircles me;
they have pierced my hands and feet—
17 I can count all my bones—
they stare and gloat over me;
18 they divide my garments among them,
    and for my clothing they cast lots.

19 But you, O Lord, do not be far off!
    O you my help, come quickly to my aid!
20 Deliver my soul from the sword,
    my precious life from the power of the dog!
21     Save me from the mouth of the lion!
You have rescued me from the horns of the wild oxen!

22 I will tell of your name to my brothers;
    in the midst of the congregation I will praise you:
23 You who fear the Lord, praise him!
    All you offspring of Jacob, glorify him,
    and stand in awe of him, all you offspring of Israel!
24 For he has not despised or abhorred
    the affliction of the afflicted,
and he has not hidden his face from him,
    but has heard, when he cried to him.

25 From you comes my praise in the great congregation;
    my vows I will perform before those who fear him.
26 The afflicted shall eat and be satisfied;
    those who seek him shall praise the Lord!
    May your hearts live forever!

27 All the ends of the earth shall remember
    and turn to the Lord,
and all the families of the nations
    shall worship before you.
28 For kingship belongs to the Lord,
    and he rules over the nations.

29 All the prosperous of the earth eat and worship;
    before him shall bow all who go down to the dust,
    even the one who could not keep himself alive.
30 Posterity shall serve him;
    it shall be told of the Lord to the coming generation;
31 they shall come and proclaim his righteousness to a people yet unborn,
    that he has done it.

I trust the work I’m doing to rid myself of this absorbing sense of guilt, will powerfully aid in my overall healing process. Once I am more willing to put down the weight from my shoulders and embrace appreciation and acceptance for the crosses I’ve been asked to carry, then my body will become more receptive to the nutrients, remedies, and maybe even one day, far from now, a cure. Today Dr. Rupp expressed his personal frustration over being so baffled by my case. He has put in countless “off-the-clock” hours trying to get to the root of it all, but unfortunately he is still gravely perplexed by this nasty puzzle. My competent doctor admitted, that while he is confident in his ability to ease my pain and shut down the detrimental immune processes ensuing, he is unsure whether some of the damage to my nerves, heart, and brain, will be reparable. Be this the case, I am now more hopeful that I will be able to confront this reality with appreciation for the progress, instead of guilt over the remaining impairment.

Thankfully, the laws of nature differ from the ways of the American judicial system. Anyone who struggles with a disability, for an extended period of time, should continually remind themselves: instead of “innocent until proven guilty”, we are forever, entirely innocent.