A VOICE IN SUFFERING...

Now faith is being sure of what we hope for and certain of what we do not see. This is what the ancients were commended for. Hebrews 11:1,2

It is a fearful privilege knowing that people actually read our blog and are even asking others to read it, as well. Though it is an honor that you would care to be part of our journey, it also feels like a tremendous responsibility to us, and we do not it take lightly. We want the things we write about here to make a meaningful difference in the lives of those that check to see what is happening to us. We want the words we say to be thought provoking, not unhelpful or hurtful; certainly not tinged by an attitude of hypocrisy or self-righteousness. There is a weight of seriousness upon our life right now. It seems as though we have been granted a unique opportunity to be a voice in the lives of others in the midst of our suffering. Though there is a great inadequacy within us, we want to express the thoughts and intents of our heart. And so today, we will make our attempt to be as authentic and as transparent as we know how to be. We would like to share with you some of our low points; the not so good thoughts and feelings we have had up until now.

We have been under some intense and stressful circumstances lately. I have to admit that this whole ALS thing has been a lot harder than I ever could have imagined. Right from the beginning, I had read about the progression of the disease and what was to be expected along the way. Intellectually, I knew what was going to slowly happen, but actually living through it has been completely different. Now that it is happening, and not so slowly I might add, it is like trying to stay ahead of an enormous tsunami—it’s just too big to keep out in front of without being overwhelmed by its powerful force. Gene’s condition continues to deteriorate. At this time, Gene is confined to his wheelchair, his recliner, or his bed. He can do very little to care for himself. The lack of mobility is very hard on his body, and he is uncomfortable often. Everyday his weakness is more pronounced, including his diaphragm.

These past few weeks have been hard for us. We have never been under as much stress as we are right now; far beyond my own ability to endure. With frayed emotions, I have been surprised by my own inability at times to cope with the challenges and to hold it together. Nothing about any of this has gone smoothly or easily; everything has had a struggle attached to it. There have been difficult obstacles and challenges to face every day; some seem insurmountable. Emotional fatigue has worn heavily on my ability to tolerate frustrating situations. I get so frustrated and angry with some of the agencies that we deal with when things don’t go right, which is often. I lose my patience easily when a piece of equipment doesn’t work the way it is supposed to; nearly, every day. I want to scream when someone parks in the handicap space, but they have no handicap sticker displayed on their car and there is nowhere else for us to park. I feel so frustrated when I am not physically strong enough to help Gene do something he wants or needs to do. I am completely overwhelmed at times when we have so much that needs to get done in a day’s time, and I can’t possibly get it all done. I feel extreme sadness when I know how hard it is for Gene to sit passively by, unable to help or participate in his own care. I feel resentful and my heart is grieved because we can’t do the things we used to do together. I feel angry that ALS is robbing me of my husband.

We have also had a number of disappointments that have put me over the edge and have left us feeling sad and discouraged. The relentlessness of Gene’s ALS and the demands of the situation have broken me. I admit ALS has brought out the very worst in me. I am ashamed sometimes at my reactions, and I have been surprised by the darkness of my feelings.

I can only risk sharing with you my true feelings of frustration, resentments, and the depths of pain and despair because I don’t believe I am unique. Everyone, at some point, has come up to the edge where it feels like we cannot take it any more. Whether we are willing to admit it out loud, or we keep our feelings deep inside, God is fully aware of the true condition in our hearts. We cannot fool Him.

Sometimes when we are experiencing the deep depths of pain, we find it challenging to navigate through the darkness. Though we see through a glass darkly, we can hear from the voices of those that have suffered before us. God has provided in His word the voices of many that have suffered far deeper despair than I have. Though I am very encouraged by a number of others, I have rekindled a friendship and have found a suffering companion in the Book of JOB. In his deep suffering Job has given voice to my suffering.

All that Job possessed on this earth was suddenly taken away from him, including his beloved children. But, if that were not enough Job is tested again to the limits of his human capacity when he is once more struck; this time in his own body. Job becomes covered in painful sores from the top of his head to the soles of his feet; it is more than he can take. In all of Job’s losses he did not sin by charging God with wrongdoing. But, what I appreciate most about Job is his honestly in sharing his feelings of hopelessness. Surrounded by the darkness of his desperate situation, Job plummets into a pit of despair. Blinded by the immensity of his pain Job cries out, “If only my anguish could be weighed and all my misery be placed on the scales!” Job 6:1.

After Job’s long and painful discourse, God finally answers Job out of the storm. Though God never gives Job an explanation to his very painful circumstances, Job confesses he spoke of things too great for him to understand and things too wonderful for him to know. Even before Job’s life is ever restored to “normal”, he is able to persevere in suffering “because he saw him who is invisible” Hebrews 11:27.

The strain and the stress of a protracted trial can cause us to lose sight of our vision of the invisible. Though God seems to hide Himself at times and our circumstances do not change, our hope is restored when we are able to see Him who is invisible.

Gaining an eternal perspective in the midst of deep pain is something we would like to share with you about the next time. But, until next time I will gain my footing again; God is faithful. We are fixing our eyes not on what is seen, but on what is unseen. For what is seen is temporary, but what is unseen is eternal. 2 Corinthians 4:18 …This is what the ancients were commended for. Hebrews 11:2

Until then,
Gene and Michele

Why are you downcast, O my soul? Why so disturbed within me? Put your hope in God, for I will yet praise Him, my Savior and my God.

Psalm 42:11