I was recently diagnosed with a degenerative neurological disorder that has changed my life. The diagnosis was a relief in some ways (at least this has a name and is not about it being psychogenic or something like that!) but on the other hand, it has begun to hit me that this is going to get worse, not better. I know you have a disability and live with chronic pain as well so I wondered how you manage it all? How do you make sense of your illness? Is it about uniting your suffering with Christ's? Do you use medications for pain or seizures and if so, why do you do that if it's really all about uniting your sufferings to Christ? As you can tell, my mind is racing, I am angry and frightened, and I am thinking about things I have never thought about before. Can you help me?]]
Thank you for your questions and for the way you poured them out! Let me say that God, as I understand the question, does not will our suffering any more than he willed Jesus' torture and death by crucifixion. What God did will in that case was that Jesus continued living his life with integrity and faithfulness even in the face of serious threats and terrible danger. Jesus was to continue proclaiming the Kingdom of God in communion with the One he called Abba, but the actual torture and death perpetrated in the supposed name of God by idolatrous leaders was not the will of God. For most situations involving suffering that I can think of, the truth is the same. What God wills for us is that we live with integrity and faithfulness, in freedom and truth, empowered by God's love and that we do this sure of the value of our lives no matter the degree of our suffering, disability, illness, etc. We are to be people who live and thus proclaim the Gospel of Jesus Christ and the reality of the Kingdom (sovereignty) of God that gives our lives meaning despite and even in and through our suffering.
God does not need our suffering. What is true, however, is that we need God's grace and must come to depend completely upon that grace. This requires a serious learning curve, including an inner conversion process if our dependence is to occur with the necessary depth, fullness, and maturity. Suffering can help us grow in the various ways we must grow to truly depend on God to the extent Jesus demonstrates (reveals) is proper to authentic humanity. Even so, while suffering can assist in this necessary growth by helping to wean us from an overweening self-dependence or individualism, this does not translate into God sending or needing our suffering. God needs human beings to "let him in," if he is to be Emmanuel, God With Us. He does not, however, force himself on us in any way; God uses circumstances to find and create openings to our hearts and minds. While we can say that godless death has been destroyed and Jesus has won the decisive victory over sin, we still live in a world where sin and death have some power. We look ahead to the day when heaven and earth completely interpenetrate one another and are one. On that day there will be no death or sin, and no suffering because we will enjoy fullness of life and communion with (life in) God.The idea of making up what was lacking in the sufferings of Christ is not about Jesus' suffering or death being objectively inadequate to redeem creation, but about the need for us to allow the fruits of Jesus' objective victory to become the subjective truth of our own lives. Sin and godless death have been overcome and transformed by the presence of God. Jesus' openness to God and the depth of his "taking on" sin and death for our sake opened these realities to God's presence more profoundly than we ever could, but at the same time, God does not force his way into our lives. Only we, empowered by the Holy Spirit can allow that. When we open ourselves to Jesus and all he accomplished objectively, then subjectively speaking, we are "making up for" what was lacking in Christ's suffering and death.
You ask how I manage the suffering in my life, or how I make sense of my illness, and so forth. First of all, I do not manage by assuring myself that any of this (illness, suffering) is the will of God. It is not and believing it was would distort my theology and prevent me from believing in God at all. What I know is that while suffering is real, it is not the only, much less the deepest or most meaningful reality of my life. There IS what God truly wills as well, and it is that I believe we each must hold fast to in faith, hope, love, and real joy!While suffering is difficult (and sometimes it is especially so!), I try to keep this second constellation of things in mind. I try to remember who God calls me to be, who God has made me, and the mission in which I share. Suffering will inevitably come, but in the way I live my life, it must be secondary to the vocation and mission that God has entrusted to me in Christ. My suffering is thus contextualized within this larger and more powerfully sustaining reality. It becomes meaningful only in light of this larger context. Spiritual direction reminds me of who I am and my director encourages me to stay in touch with the deep truth and potential of that identity. To be frank, it is either that or it is to allow myself to be swallowed up by the suffering. I must not let that happen!
When I have written about a vocation to chronic illness it is a way of maintaining the same perspective I have been outlining here. I have stressed, even in the work on chronic illness as vocation, that God does not call anyone to be chronically ill. Instead, he calls us to be ill within the church and Gospel so that we witness to Christ's love and compassion, and the possibility of essential wholeness even in the presence of various forms of brokenness or illness. Especially, I remind myself that we are all pilgrims on a journey to a time and place where God will be all in all and there will be none of the struggle or suffering that exists today.
Yes, I take meds for medically and surgically intractable seizures, chronic pain (CRPS), and several other things as well! (I am getting older, after all!) I do it because, as I said above, my own calling as a Christian (not to mention as a Catholic Hermit) is the witness to the truth of a larger reality and context than my own suffering per se. Medications help me in this and I honestly couldn't function, much less be or become fully human without them. Instead, the suffering would have swallowed up my life and any larger vision of its meaning or mission I might have had. This larger context doesn't make it impossible for me to suffer with Christ, but it does help me to live with and in him. It also allows even the suffering I experience to be transfigured into a source of grace. For me, it is critical that, as much as possible, one not focus on the suffering per se, but instead on the larger mission and vocation, both ours and Jesus' as well. Of course, it is important that we not deny or diminish our suffering either; still, we must not allow it to become the whole or even the predominant story of our life. Unfortunately, I have seen some people do this with their own suffering; they have no story to tell apart from their own conversations about their suffering. It is my sense that we are each called to much much more than our sufferings, even when these sufferings predominate. (Certainly, this is what is revealed in Jesus' life, death, resurrection, and ascension!!) I believe that keeping suffering contextualized in this way is the very best way to suffer well!What you are looking at in your Dx is both a terrible uncertainty and an equally terrible certainty. I will certainly pray for you and I ask that you pray for me as well. At the same time, I encourage you to do all you can to refuse to allow your diagnosis to take over your identity. This would be the worst kind of betrayal of either yourself or of God. God has made you much more than your illness and he has called you to witness to the power of his creative love. I think that is the only way to really manage serious chronic illnesses. We must find and witness to the larger hope to which we are called --- the larger life, meaning, and purpose that allows even suffering to be transfigured in Christ. At least, that is what I try to do myself.
I sincerely hope this is helpful!!