My Brain Is Dying

DSC_0003_003There is a medical alert bracelet on my left wrist. Medical alert bracelets are there to notify others of some special condition in the event that the wearer cannot speak for himself. Things like diabetes, allergies, heart conditions, epilepsy, and Alzheimer’s Disease. Mine says:

Michael Gooding
Dementia – BV FTD
ICE <phone number>

The idea is that if someone finds me wandering around in my underwear at two o’clock in the morning, they can look at the bracelet to see why I’m behaving that way (I suffer from dementia) and who to call (my wife’s cell phone).

I suffer from a neurological condition called Behavior Variant Frontotemporal Degeneration (FTD). It is one of a family of dementias of which Alzheimer’s Disease is the most well known. The upshot is that nerve cells are gradually atrophying in my brain’s frontal lobes (the areas behind the forehead) and temporal lobes (the regions behind the ears). In other words, my brain is dying, beginning with the areas that control judgment, empathy, foresight, and conduct. So you see, wandering around in my underwear at two o’clock in the morning is not an inconceivable scenario.

There is no cure for FTD. There are no therapies to slow its progress. Statistically, the median survival rate for people at my stage of progression is five years. Some live longer; some not so long. I am sixty-four, so I have a fifty-fifty chance of seeing my sixty-ninth birthday.

I’m okay with this. We all have to die sometime, and I have lived an interesting and fulfilling life. I am ready to meet my Maker whenever he says, “It’s time to come home now.” In the meantime, whether I have another ten or fifteen years, or only two or three, I try to live each day as fully and as authentically as I can. I’m pretty sure that’s all any of us can do.

Death does not concern me, but dying does. My concern isn’t for myself, but for the people around me, especially for my wife and daughter. I have the easy part; all I have to do is die. They have the hard part. They have to watch me gradually and inexorably lose my ability to think and act and care for myself. They will most likely have to put me in some kind of long-term care toward the end. They will have to find a way to let go of me as I fade away. Then they will have to figure out how to move forward without me. It is not difficult to imagine the medical, financial and emotional challenges they will face. I wish I could spare them this journey. (But then, who am I to make judgements about other people’s journeys?)

My brain is dying. The medical alert bracelet on my left wrist reminds me of it every day, which in turn reminds me that each moment of each day is precious. It reminds me to hug my wife and tell her I love her. It reminds me to visit my daughter and play with my grandchildren. It reminds me to take time to sit on the deck and listen to the sounds of wind and birds and children laughing. It reminds me to reconnect with old friends. It reminds me to make time for the things that matter most and that bring me joy.

There is a medical alert bracelet on my left wrist. It reminds me to live.


As always, thanks for taking the time to visit my blog. Comments are welcome.

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27 Responses to My Brain Is Dying

  1. Celia Davis says:

    Thanks for the reminder of what living is all about–or should be.

    Like

  2. Kelly West says:

    I wish I had words. Only tears… and prayers. Much Love, Kelly

    Like

  3. Matt Linden says:

    Well that was s jolt to start my day. I realize that you wrote it for the rest of us. I’ll try to be a better person because of it. I’ll certainly be more patient and aware of all the gifts around me today.

    Like

  4. ectully13 says:

    We all need to remember that each moment of each day is precious. Too often forgotten.

    Like

    • Michael says:

      In principle, my situation is no different than anyone else’s. We’re all doing to die and none of us knows when. But somehow, this diagnosis has made it too real to ignore. Which is a good thing.

      Like

      • ectully13 says:

        You’re right, we all should live like each day is our last, but sadly we get bogged down in the details of living.

        Liz

        Like

      • Michael says:

        Eric Weiner, in his book The Geography of Bliss, tells of a Tibetan monk who told him that if he wants to be happy, he should think about death six times a day. Instead, most of us practice denial, pretending we will live forever.

        Like

  5. Rhys Pollard says:

    Michael,

    I’d like to publically tell you how much of an impact you have had on my life, partially in my early teens.

    You bought into my life (and 67% of the church you lead at the time) the fullness of our loving God.
    You spoke life into me, you baptized me in the “Name of the Father, Son & Holy Spirit” (much to the horror of the 33% I’m sure ha ha ha).

    You raised up & encouraged those around you to be all that God desired of them.

    After you left & went back to USA, I decided to leave the church you lead & find a church that didn’t put God in a box and allowed him to be all the things that Pastor Michael Gooding spoke about.
    I didn’t have to look far; in reflection I believe that God lead me to this great little church. I found many wonderful things there, great leadership & a community of people that were passionate about the things of God. One of the wonderful things I found there was a beautiful Wife & now 3 amazing children (12, 15, 18)

    Michael, thank you for answering Gods call and coming to that faraway place. (NZ) I’m not sure how you feel when you think back to your time here, BUT one thing I do know is, you changed my life forever.

    Much Love & Blessings

    Rhys Pollard

    Proverbs 3:5-8 (MSG)

    Liked by 1 person

    • Michael says:

      As I look back over our years in New Zealand, I sometimes wonder if I got any of it right. There was so much joy and so much hurt, and it was all very confusing. More often than not I found myself saying, “God, I sure hope you know what you’re doing, because I don’t have a clue.” Thank you so much for reminding me that God was in the middle of it all doing the things he always does, and that it was always about him, and never about me. Reading your comment has filled my heart with joy at a time when I need all the bits of joy I can get. Thank you for that gift.

      Like

  6. Linda says:

    My husband has a FTD and I try hard to find writing that helps me and us think about it and live with it and through it. Your words are honest and helpful. Even healing, for the moment. Thank you.

    Like

    • Michael says:

      I am so sorry, Linda. For you and your husband. You have probably figured out that “one day at a time” is the only way you can do it. Please feel free to contact my wife trueda@mtgooding.com. She is doing a lot of research on FTD as we try to plan for what we know is coming down the road. In some ways, this sort of thing is harder on the caregiver than the patient.

      Like

  7. Janice Lawson says:

    Michael – you don’t now me. I read your blog as a result of a post on an FTD support site. Neither I, nor a family member, that I’m aware of, have FTD, but I’ve had an aunt and an uncle who had Alzheimer’s. However, I have several friends with FTD, and my heart breaks for them. God has given me a real interest and care for those dealing w/ FTD. Reading your blog, I realize what godly and courageous people you & your wife are. So far, prayer has been my main connection for those I know suffering with this dreadful disease. Prayer for those dear people on the FTD support site. They don’t know me & very few even know of me or my prayers for them. I will now add you and your family to my prayer list. I pray for God’s tender mercies for you and your family.

    Like

  8. Janice Lawson says:

    * know * (not now)

    Like

  9. Michelle Mantel says:

    God bless you and your loved ones. Thank you for sharing your story.

    Like

  10. Gayle says:

    I lost my husband to FTD in May. It was nearly a ten year struggle for me as well as him.. It is devasting disease and so difficult to deal with due to the behavioral issues and the unpredictability of the patient. My heart goes out to you and your family. Thank you for your courage to blog about the effects of FTD..

    Like

    • Michael says:

      I am so sorry for your loss, Gayle. And for the truly awful experience you went through as his caregiver. I hope you have found a way to work through your grief and move forward without him.

      Like

  11. I had this in my saved pages on FB, to read when I got back to good Internet access. My heart breaks for you and your family, I feel blessed to have been online friends with you and your wife. I wish we could have met in Ecuador but that wasn’t meant to be. I hope your family has a strong support network but I also hope the progression is slower than anticipated so you can live life fully for as long as possible. Keep on savoring each and every imperfect day!

    Like

  12. Becky Noteboom Moulton says:

    Hi Pastor Mike…I really haven’t forgot!! (Smiles). You may not remember, but you gave a recommendation to my mom when I was barely into my 20’s for some counseling……I ended up getting some much needed therapy during my crucial “trying to find myself” years. The process has been ongoing as I am now mid-life. You also did my maternal grandmother’s funeral service as we sent her to the heavenly realms.💟💟💟 I’m so glad you are both back in Bellingham, and I look forward to seeing you, as do my folks, who are now 85 and 86. Thank you for sharing your story, you continue to touch lives all over!! God Bless and keep you…..Love to Trueda, too.

    Like

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