I'll be quoting from John S. Feinberg, When There are No Easy Answers (Kregel 2016). He's an evangelical philosopher and messianic Jew. His mother suffered from chronic pain. His father developed dementia. His brother died of complications from diabetes. His wife has Huntington's disease, which, in turn, carries a 50/50 chance that it will be transmitted to their children.
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At various times in my life I pondered whether I would still want to worship and serve God if he rewarded my faithfulness with severe affliction (17).
Something else that heightens the feeling of abandonment. Invariably when news like this comes, people are very concerned; but for various reason, they tend to stay away. Some may feel that they will say the wrong thing and only make matters worse. They just stay away rather than taking the chance of sticking their foot in their mouth. Others may think that unless they have something "brilliant" to say that will remove all the pain and heartache, they should avoid the sufferer. Believing that they have nothing special to say, they don't communicate at all with the sufferer (29).
Over the weeks, months, and years of dealing with tragedy, people who suffer "get used" to the problem they are facing. Adjustments in schedules are made as needed, and after a while, life returns to at least a semblance of normality. As this happens, those dealing with suffering and trials speak less often about the challenges facing them. Friends and family tend to take this as a cue that the sufferer is getting over whatever horrible things have happened. They assume, then, that the afflicted person must be doing fine with what has happened. As a result, they make little point to ask about the situation or offer any help that might be needed…[But] the burdens the sufferer bears are just as heavy as they ever were, and after bearing them for a long time, in some ways they hurt even more than they did at the start. Please remember, personal tragedy leaves an indelible mark that will only go away in eternity when God wipes away all tears. But we aren't there yet; so while the sufferer still bears the loss (as will be the case as long as he or she lives), continue to minister to his or her needs, just as you did during the first days, months, and years after tragedy struck (54-56).
In the weeks and months following Pat's diagnosis, I had so many thoughts and emotions rushing through my mind that I felt like there was a war going on inside my head. I felt like I had to express my thoughts, but I found few who would listen. It's not that I think friends and acquaintances didn't really care. I just think they weren't sure what to expect if they listened and whether they might make me feel worse by saying the wrong thing in response to what I would say. It was easier to pray for us or to offer a word of concern than to listen. Even today there are times when I just need someone to listen to how I feel and to what I've been thinking. And this is why it is so important for us to "be there" to listen, even if we have nothing profound to say in response. At times of crisis our profoundest contribution is our presence and our open ears. It says that we care and we understand the need to make public what is going on inside the sufferer's head and heart. So don't avoid the afflicted out of fear that you don't have the "magic words" to make the pain go away. Even if you have those words, when the pain is new and so intense, the sufferer cannot process what you would say. By listening instead, you gain the right to be heard when the sufferer is really ready and able to listen.
Listening alone won't make the pain go away, but it is a key first step. I hope I can encourage readers not to abandon the sufferer. I hope you will see that even if you don't have something to say that will remove the pain, you should still go to your suffering friend or family member. This is true not only when tragedy first strikes; it is true for as long as the sufferer deals with his loss. Even now, there are times when I just need someone to listen to me talk about how I feel and what I think about what is happening to my wife and family. Listening is far more helpful than you can ever imagine (59-60,62).
Here I must add that it is important for others to visit people who are sick. Thankfully, there are some friends who visit Pat regularly. But others visited only occasionally, and then stopped once Pat was not able to talk or interact with them. I understand that people like to think that when they visit the sick, it makes a difference to the patient. When the patient can't respond, it is easy to think you are accomplishing nothing, and so I understand why they stop visiting. But I must say two things. If you go at least in part because you think you can do some good for the patient, don't' assume you haven't helped just because the patient can't speak. If you could not speak, would you be happy to be left alone all day?…If you abandon your sick friend, what does that communicate? (63).
If I were ever to pastor again, I know one thing I would definitely do. At the very outset, I would work with church leaders to identify all the people in the congregation with special needs. And I would see to it that at least once every week (and no less than once every two weeks) someone in the church would contact these people…People with special needs may have little or no contact whatsoever with anyone for weeks at a time. Your love and care for them may be the only thing that brings any light into their life and dispels their loneliness, and it may be the only reason that they continue on in the faith. Though it may seems like an small investment of time and energy to those who do help, there is no way you can imagine the positive impact it will make when those you serve see that someone still cares and is there to offer a helping hand (70).
In previous chapters I have shared various lessons I have learned thorough our life experiences, and things that helped me to cope with our situation. But there were still a couple of issues raised along the way that bothered me. I knew that until I resolved them, they would continue to gnaw at me. I begin with the question of whether you could seek and find God's will only to wind up in a situation with severe affliction, something you expressly asked God to keep you from. And this raises the interesting theological question of whether on some occasions God gets us to do his will by withholding information from us, information that would have kept us from the situation.
Once we got Pat's diagnosis, it seemed that I had made those choices under false pretenses. I believed God was leading me to choose one sort of life, when in fact I wound up with exactly the life I was trying to avoid. In fact, I was saddled with a situation worse than anything I could have ever dreamed in my worst nightmare. For a long time I was hurt and anguished by the thought that somehow God deceived me into marrying Pat by hiding information that could have saved me from my present circumstances…was it really God's will that I marry her but when one follows the Lord's leading one can expect to be double-crossed? How can one teach theology and write books about God, and yet be apparently so mistaken about how God works in people's lives? Such thoughts are among the most disturbing that I faced over the years, and they have been as disruptive to my relationship with the Lord as anything that I have ever experienced…The truth is that God had never promised me anything about my wife's health (99-100,104).
It is now more than twenty-eight ears since we first learned that she has Huntington's. That's a long time to live with someone who is slowly dying…The same old feelings of helplessness and hopelessness are always there, but increasingly they are joined with a growing loneliness as the Pat I married slips slowly and irreversibly away…Every time her condition became worse, it was much harder emotionally to deal with the changes than I'd anticipated. I had imagined what it would be like but it was always worse, and for a while I wondered why. Before too long I saw the reason. If you imagine what will happen next, you can make yourself feel very sad while you think about that. But the sadness doesn't last, because you know that she has not really reached that new level yet. When she does reach that level, you know that this is real and it won't go away. Seeing how bad things are and knowing that it will only get worse, you cannot help but feel more depressed. Indeed, the reality of what this disease is doing is always worse than whatever I can imagine (107,114).
When we first met and later decided to marry, there was no way we could have foreseen that our marriage would come to this–relatively short visits together each day in a nursing home…I also believe that God had another major intention for me, and it relates to marrying Pat. God decided to provide someone to manage Pat's needs and take care of her, and I am that someone…Over the last two decades or so as I have helplessly watched Pat's condition worsen, I have thought on a number of occasions that the point of this marriage is not about me but about her (115,124).
Do I have any regrets over marring Pat and having a family? If this question means would I have married her if I knew then what I know now, the question is really impossible to answer. If I knew then what I know now, I would have known what a blessing from God she and my sons would be. I would have known all the problems I'd avoid by not marring her, but I'd also have known of the lost blessings. Would I give back those incredible blessings to escape the trials we have experienced? While many of us might wish for a different life, that is probably because we think a different life would be one with no problems, or at least one with nothing catastrophic. But in a fallen world there can be no guarantees of a life with only happiness and no problems or challenges. So perhaps I could have avoided the pains and sorrows that have come our way. But a different life might have had different but even worse problems than those we have experienced. I certainly know that I have received many great blessings, and I wouldn't want to lose them! (128-29)
When Pat moved into a nursing home, I had to pay a deposit of one month's fees, plus the amount it would cost for the first month of care. This amounted to around $13,000–indeed, nursing homes are not cheap, and this was back in November 2007. I didn't have that kind of money in my checking account, so I paid for it with credit cards. But the Lord had a very welcome surprise in store for us.
My lawyer had been preparing the Medicaid application all summer, and filed it once Pat moved into the nursing home on November 15. Early in December, I received a call from a nurse at the nursing home. She asked about the brand of liquid food Pat used, because it was time to order a new batch. She wanted to know so that she could place the order and bill Medicaid. I told her that we had applied for Medicaid but hadn't yet heard whether Pat had been approve for it. The nurse told me that she saw in her computer that Pat was a Medical patient. After a few calls to government health agencies, I confirmed that Pat had been approved for Medicaid.
Needless to say, we were overwhelmed when we learned that within fourteen days after our lawyer submitted the Medicaid application, it was approved. And the approval was retroactive to the day she moved into the facility! All of the money I had given the nursing home would be refunded. I found this very had to believe–government agencies never move that quickly! Clearly, God's hand was in all of this. We again had a vivid reminder of the goodness of the Lord (112-13).
