…but what else do I need?

This post describes, in part, the effects of a degenerative neurological condition called Huntington’s Disease. Any negative behavior on the part of my wife should be attributed to that condition. Any negative behavior on the part of myself should be attributed to my need for God’s ongoing grace.

This week we had an appointment with Janet’s neurologist. It went well, though her weight had gone down 2 lbs. Janet started a new medication this week that should help her with mood, chorea and sleeping. So far it seems to be helping a lot with her sleep. Last night she went to bed about midnight and didn’t wake up until about 10:30 am! Mood is continuing to be a problem. Last night she was yelling at me and Frannie about cough medicine. She said that I lied because I forgot to get the cough syrup that Frannie requested when I went to the store on the way home from work. Then when I found a bottle of a different brand at home and Frannie told me that it was ok and would work fine, Janet started yelling that Frannie was lying too. At that point I stepped in to protect Frannie and things went downhill from there…

After the party that I discussed last week, things went well between the two of us until Janet’s dad heard that I was (a) divorced and (b) a Lutheran. To this day, I’m not sure which bothered him more. I found out later that before we met Janet hadn’t been to Mass in 15 years, and although we had only known each other for 6 months, I somehow became responsible retroactively for the entire 15 years of her apostasy. In any case, one Sunday we were at her mom and dad’s house and they asked Janet to come with them to a back bedroom. A few minutes later she came out and announced, in no uncertain terms, that we were leaving – Jan was clearly angry. When we got out to the car she told me that her parents had been grilling her about my past life. She tried telling them that we had discussed it in detail and that was all that was necessary. But not for her dad, he just kept getting angrier and angrier. Have I mentioned that we think her dad is where she inherited the HD?

The whole next day at work, the conversation kept replaying in my head and every time it did, it bothered me more. So I decided to go back and talk to them about it – without Janet. By the time I get to my future in-law’s house, I was angry too. When I sat down to talk to her dad I reiterated that she and I had discussed everything so she was going into whatever was ahead with her eyes open. Consequently, if he had any questions about my past he was to talk to me directly and he was not to harangue Janet about it.

So he demanded to know whether I was paying child support. I assured him that I indeed was paying support. But he pressed further, “How much are you paying?” Looking him in the eye, I told him, “None of your damned business. Next question?”

For a moment, I was afraid that I had overplayed my hand. You see a few years before Janet’s dad had suffered a stroke and I was momentarily afraid he was going to have another one. His face turned a bizarre reddish-purple color and the veins on his forehead were bulging. So reckoning that I had made my point, I left. Later, when I arrived at Janet’s house, she met me at the door and related to me the contents of a phone call she had just had with her mother, and asked me if what her mother just told her on the phone was true. I told her it was, and she hugged me around the neck.


In the past, I have talked several times about the loss of identity that can occur when you lose a loved one and are grieving that loss. For example, after 30+ years of marriage, you might have come to identify as one half of a couple. But when that relationship ends you can be left wondering who you are now. Of course with diseases that produce dementia, your loved one doesn’t even have to die for you to experience that sort of identity crisis. As their personality changes, or worse, dissolves completely, you can be left in a state where you question everything about who you are, what you are doing and whether your work is actually accomplishing anything useful.

I believe that crises of these sorts all lead back to a common root: needing to be needed.

So to explore that point a bit, let’s start with the situation where your loved one is still alive, but is rapidly deteriorating. Oftentimes when a loved one is newly diagnosed with a degenerative disease, they respond with thankfulness and gratitude for every little bit of service that you provide them. But then things start to change. Due to the effects of the disease, the warm feedback stops and your loved one becomes sullen, uncommunicative or even openly hostile. Instead of the original, “Oh thank you, honey, for getting that sandwich for me.” You have to deal with, “So what took you so long?!” – or worse. To address this case, let’s take a riff on a famous kōan:

“If a tree catches fire in the middle of the forest, and there is no one there to see it, is a fireman needed?”

Clearly, one tree can catch another, thus leading to a wide-spread conflagration, so in one sense, yes, a fireman is needed. Now, let’s say that by chance, a fireman happens by and seeing the flames, puts them out, and saves the forest. The thing is, as that fireman proceeds on his way, he may be basking in a real sense of accomplishment, but it’s very likely that he won’t feel “needed” because there was no one around to acknowledge that need or express gratitude for his actions.

Here we see in stark contrast the two aspects of needing to be needed. One is the objective question of whether or not some action is actually warranted. The other, subjective point, is how your actions are perceived. From this explanation we can see that most scenarios where a caregiver complains about not being needed are actually cases of where they don’t feel needed – an important distinction.

Consider that saying, “I’m not needed”, is voicing a statement that is almost entirely about you: You are not adequate for the task at hand. You are not important. You are not enough. However, saying, “I don’t feel needed.” is a comment that is all about the care situation. In fact, the assumptions behind such a statement are that you are adequate, and you are important, and you are enough. The problem is in the reaction. That is a much different, and far easier, problem to solve, and one that we have talked about before.

Curiously, this dichotomy can even exist in the situation where the loss is complete because the loved one has died – though it looks quite a bit different. Now the objective view affirms that you indeed are not needed because the person needing you has died so there is nothing more that you can do for them. But here, the subjective view can come to your rescue by pointing out some important things to consider.

Above all, there is the matter of perspective. Maybe you aren’t feeling needed because your worldview is too small. Instead of wringing your hands over being “useless”, try asking God, “What is there for me to do?” Alternatively, you can look at the challenges that you have recently faced and reconsider them from the standpoint of the question, “What was God preparing me for?” Now admittedly that might be a novel perspective for some, but I have found that it’s the novel perspectives that give the most interesting answers. Oh, and given that there is no such thing as a coincidence, don’t forget to consider the talents that you have picked up along the way – even a trivial one like knowing how to knit…

To illustrate, many years ago when we lived in Tucson Arizona I heard a story on the radio about how dangerous hypothermia can be for people living in the streets – even in Tucson. So in response, I came up with the idea of creating an interdenominational project to knit stocking caps for the homeless men, women and even families. Each cap came with a tag inside it that said:

“This cap was not bought in a store. It was hand-knitted by someone who believes that you are worth the effort it took to create it.”

For distribution, I went to the Salvation Army. By the end of the project, they had handed out over 700 caps that we created.

Now I assumed that this project would do great things for the folks receiving the caps. What surprised me, though, was the gift that it was to the knitters. For example, one the ladies was from one of the big Catholic churches downtown. She and her husband had been active members for many years and when he passed, she embraced new role as widow, and threw herself body and soul into serving the parish. She chaired committees, headed up charities and out-reach programs, you name it.

Then one day her doctor told her that she had a very bad heart and that she had to stop all outside activities – she wasn’t even allowed to leave her apartment to go to Mass. In one day, she went from being involved in everything to feeling literally quite useless. And to make matters worse (from her perspective at least) it quickly became apparent that all the parish organizations that she had been in were managing quite nicely without her.

A few weeks later when the priest came by for his weekly eucharistic visit, he told her about this guy who had contacted the parish office with a project to knit stocking caps for the homeless. Maybe that was something that she could do since knitting isn’t at all strenuous. So she called and I explained the project and why it was needed. Even though it had been years since she had knitted, in the end she agreed to try. The next day I went to visit her and give her some yarn to get started and a pattern.

To make a long story short, she attacked this new project the way that she had everything else in her life and soon she was turning out caps at an amazing rate. It didn’t take her long to use up the yarn I brought her. So she had friends run to the store and she bought more yarn on her own, and people she knew from the parish brought her even more when they heard about what she was doing.

With this simple thing she found new meaning and new usefulness. But mostly she found people who truly needed her.

However, all this discussion begs the question, “What is it about being needed that we find so important?” Well I believe that when God created humankind He, metaphorically speaking, left His fingerprints in the wet clay. And I believe that one of those fingerprints is our deep need to serve others. The reason we need to be needed is that it’s built into who we are as people. In fact, it’s so much a part of who we are that to deny it we have to in essence deny our very humanity. Perhaps this is the one of the root problems of big cities and other environments that teach us to ignore others and just look out for ourselves: survival is framed as being dependent upon us not being human.

So to close I want to quote Ralph Waldo Emerson. I feel with its pithy, very New England tone, this statement puts the point particularly well.

“The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.”

In Christ, Amen ☩


A prayer for when you don’t feel needed…

“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for creating me in Your image. But today I want to bless you especially for the divine mark that You left on my soul that enables me to not only enjoy serving, but allows the serving to sustain me, like emotional or spiritual food and water. Correct my too-small perspective and clear my eyes so that I might see the work that you have set before me. Dear Father, make me useful. Amen”

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