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.
Resuming where we left off 2 weeks ago…
With the new medicine things are much better. So much so, in fact, that even Janet recognizes the change. To her though, it’s because I am doing much better and acting more responsibly – OK, whatever.
One of the consequences of her clearer head is that she is more aware of her own condition: the stumbling, the choking, the weight loss and general weakness. In about a year, Janet has gone from approximately 185 lbs down to 115 lbs. A major cause for this weight loss is her inability to consume enough calories.
She frequently aspirates food when eating and chokes things up. If things continue like this, it is only a matter of time before she contracts aspiration pneumonia, which will kill her. But that isn’t going to happen. Jan has decided that if you can’t eat, that is God telling you that it’s time to go home. Originally, she wanted to stop eating immediately and let herself die. However, after talking to our son, she has decided to try to make it to Christmas so she can see him and his family one more time.
But I didn’t know how to handle all this talk of death – of course I have known it was coming, but this discussion makes it feel like we’re setting a date. In desperation born out of being scared witless, I first located and then wrote a letter to an old friend named Margie that I had lost contact with almost 5 decades ago (she was 15, I was 18). Writing her is crazy, right? Well, I said that I’m desperate.
So why pick Margie? Two things really. First, I don’t know why, but her name has been buzzing around in my head for several weeks. Second, I remember her as a young Christian woman that was always very positive, joyful and optimistic – all adjectives that are missing from my life right now. I need encouragement and support.
My original plan for the letter was to just let her know what was happening and ask for a little encouragement and perhaps advice. That idea, however, only lasted about 2 paragraphs. After that, the letter rapidly degenerated into an emotional core dump. In the end, I opened up my heart and just let pour out onto the keyboard all the pain, guilt, fear, upset and disappointment that I had been experiencing for the past few years. I mailed the letter the next day knowing that the most likely scenario is that I wouldn’t hear anything back – I mean, who remembers after 47 years, somebody they dated for a couple months when they were a sophomore in high-school?
What’s really interesting though is that prior to writing that letter I felt mentally, spiritually, emotionally and even epistemologically constipated. I was so plugged up, I couldn’t write and felt hopeless. One of the side effects of just writing the letter is that I am feeling unplugged and have begun writing again.
…A Week Later…
Well I guess miracles do happen! I got a letter back from Margie today and, as predicted, she doesn’t remember me, but she wrote back anyway because she said I put enough detail in the letter that it was clear I remembered her. Still, I can’t imagine what she must have thought reading that letter the first time!
Since Margie wrote back, we have started chatting using instant messenger. She now lives in Indiana, is married to a pastor (they just celebrated their 44th anniversary) and has 8 children, 18 grand-kids and one great-grandchild. I am also glad to report that, after I sent her an old high-school yearbook picture of myself, she now remembers me. More importantly though, she is becoming a great source of support for both Frannie and I. In fact, she has become for me something that I never had, and am only now realizing that I missed: a sister. Growing up, I had a little brother, but sisters are an entirely different thing!
For example, she has a real gift for seeing my blind spots – and harbors not even so much as a single qualm about telling me where they are. (I wonder, is this how all sisters are?) She likes to say that from her perspective, she can see the forest, while I tend to concentrate on the trees. The best part though is that we can pray for each other in ways that I find hard to explain. Despite the fact that I am in southeastern Texas and she is in north-central Indiana, our online communications feels like we are just sitting together talking and praying.
Similarly, Frannie and Margie have started to talk regularly on video chat. When Janet passes Frannie will be needing someone to help fill a void in her heart – someone like a new aunt.
In other news, someone (I don’t remember who) said something the other day that gave me the idea of writing a poem to Janet highlighting our struggles through HD. The result is titled, We Got Through it Together. When the time comes, we will use the linked version in Janet’s funeral/memorial service.
An additional side note is that Margie has challenged me to submit the poem to Christian publishers. My idea is to turn it into a kind of flip book that caregivers and patients could read together as an affirmation of their love. In addition to HD, it would also be applicable to patients with Parkinson’s and Alzheimer’s, as well as other conditions such as terminal cancer.
Since then, I have written a couple other things that I sent to our pastor for inclusion in the church newsletter. It feels so good to be writing again!
Sometimes, there is a lot to be said for the metaphorical “Hail Mary” pass where you throw – in my case, a letter – downfield and just hope that something good happens. I think that the key to a good “Hail Mary” pass is that you don’t have any preconceived ideas of what a good result would be. As I said above, I fully expected to get no response at all. After all it had been 47 years, and we had just been kids. I think maybe that is why I got the results that I did from just writing the letter. Communicating what I was feeling was cathartic in and of itself. Still, I thank God that He directed me to someone who has been able to give me and my family the friendship and support that we need. But a valid question is, why did I have to write a letter in the first place? Wasn’t there someone locally I could have talked to?
Well, yes and no.
When you are grieving, communications can be a trek across a field littered with landmines. On the one hand, you can feel embarrassed that you are asking for support. Maybe asking for help feels, to you, like a weakness, or you are afraid of disappointing or alienating people by being needy, or maybe you’re male. I know one of the battles that I still have to fight is the feelings of loneliness that I at times experience. However, since starting this blog it sometimes feels hard to ask for help because I feel like I’m supposed to be helping others. (To the ladies reading this, know that feeling reticent to ask for help is a very “male” reaction that I believe is built into our DNA, so don’t try to buck the trend – just work with it.)
Past disappointment can also play a role in not asking for help. Who hasn’t had the experience of having someone tell you that they, “…will be there for you…”, only to have their support evaporate when you need it most?
Then also, people can be judgmental when they see you struggling with a load. Perhaps they don’t agree with the original relationship or didn’t like the person that you lost. Just because someone else thinks, “…you are better off without them…”, that doesn’t mean you don’t, or shouldn’t, grieve the loss.
And then there is the worst kind of rugged individualist that can remember in excruciating detail going through something “…ten times worse…” and yet they “…didn’t go around whining about how tough life is…”. Such monologues typically end with references to “boot-straps” and the need to pull oneself up by them.
Finally, being alone and grieving can put you into a category that a lot of people don’t know how to handle. For example, someone told me about a young widow with two small kids. One of the things that she had to deal with was people (in church!) assuming that either she was divorced or the kids were illegitimate. After losing a spouse you can feel like you fundamentally don’t fit in. You had always been half of a couple, but by yourself you don’t feel like you belong anywhere. I was talking to our pastor a while ago and he told me that many widows stop coming to church because they say that being in church reminds them of the funeral. I wonder how many really stop coming because they don’t feel like they fit in anymore?
The thing is, there can be lots of reasons people don’t feel like they have support options close to home. Moreover, at least some of those reasons are issues that the church, as the Body of Christ, needs to address. Think about the place where you worship, what sort of resources do you have for fearlessly and nonjudgmentally supporting those grieving some kind of a loss? If you don’t know, now would be a good time to find out. Likewise, if you find that your church doesn’t really have anything, there’s no time like the present to start talking to folks to pull something together. I guarantee there are folks sitting in your pews right now, who are suffering in silence, one of them might even be you.
The other point that I wanted to make was that grief can result in you trying to prevent additional hurt by wrapping yourself in a self-protective cocoon. When dealing with grief you can feel overwhelmed and totally consumed by the pain that you are experiencing. In that environment it is easy to avoid, or put off, sharing the gifts that God has given you. This is what I was doing, and is why I felt plugged up.
Actually, “plugged up” is a good way to describe the condition. Fear had blocked the flow of the Spirit, the ruach, the Breath of God through my life. In the Old Testament, the prophet Jeremiah had the same experience – though he described it a bit differently. When he tried to stay silent, he talked about God’s words burning inside him “like a fire”. The Spirit is a dynamic force that intends to flow through believers and trying to block it up never ends well.
In closing, if you are supporting someone who is grieving, a really good idea might be to help them identify their spiritual gift (everyone does have one), and then work with them to explore ways in which they could use that gift to deal with and express their grief – like, for example, someone suggesting that a grieving would-be writer should start a blog on grieving. (Thanks, sis…)
In Christ, Amen ☩
A prayer for when you are feeling plugged up…
“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 the comfort that you give to the grieving. Today I want to especially thank you for Your children who reach out with Your love to those who feel lost in pain. Please show me how to openly express my internal struggles using the spiritual gifts that You graciously gave me. Likewise, use my pain to make me sensitive and open to those around me who also need to experience Your love and the free-flow of Your Spirit. Amen”
2 Replies to “Unexpected Support…”
I was waiting to read your poem! Might want to also think about sharing it with HDSA to share at convention or state conferences? You are hitting home for me with many of the same feelings of grief. Thank you for sharing your story!
Thank you for your feedback. Did you see the poem when you clicked the link?