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George is gone…
I am sad. We have lost this amazing man. George Metezsky has passed away. I don’t have the details. I will post when I have more information. I know it was sometime between the 20th and 22nd. I am devastated and I know so many others will be.
Here is something he wrote years ago. May it help and bless you, too…
I was a counselor for 30 years. Always the counselor – but I never went to counseling. I was great at being a helper – not so good at accepting help.
When I was diagnosed with ipf I was 63… married for 44 years at that point… and had the same kind of feelings you are having. Fear, anger, sadness… all the steps of grieving. And I was kind of stuck in depression.
I was with a dear friend who also had a background in counseling and laying out my tale of woe and his response surprised me. Instead of commiserating with me – commiserate literally means “to get miserable with…” – he said “Well that might be the best example of “Stinkin’ Thinkin’ I’ve ever heard!”
In the counseling business, that is called a “confrontation.” Confrontation is not necessarily negative – it literally means “to put in front of” and that’s what he was doing – putting in front of me how the way I was framing the situation and describing it made it impossible for me to handle it. If we define our life situation as awful with no chance to get better – then we are stuck.
It took me about one year from my diagnosis to switch my thinking from “I’m dying from ipf” to “I’m living with ipf… and I’m going to live as well as I can for as long as I can.”
So I guess, my friend, I’m giving you the same confrontation.
You describe your situation as always tired and sleeping. Are you getting good medical care? Are you using oxygen appropriately? Have you been checked for sleep apnea? It may be your body has just wound down that far and you will always be tired and sleep a lot – but that is not necessarily all due to your lung disease. You owe it to yourself and your spouse to make sure you are getting the best medical care possible.
You describe putting on a brave face around every one… joking and pretending to be happy, but falling apart inside – meaning you are being actively dishonest about what you are thinking and feeling with the people who care about you. Is that working well for you? Do you think that is what they want from you? I know my wife and family don’t need to hear everything… but they do need the basic truth of what I’m going through. I sure don’t share everything with anybody, but I share a lot of things with the right people.
You worry about your lovely wife of 50 yrs being left alone without you to look after her. I sure get that. I have used my time since diagnosis to make sure she has the tools to live without me. I forced her to take over some things I always did, like paying the bills and keeping our insurance going and hiring a plumber… and it was hard for both of us to make that transition. I’ve also encouraged her to not only maintain but to build up her personal support system. We, of course, have many friends as a couple – we’ve been together since high school… 58 years now. I’ve encouraged her to make new friends and she plays cards and does a book club and goes to plays and music with her women friends.
I have had to recognize that she is not a person I’ve taken care of – she is a person who has been in a long time relationship with caring and love going both directions. She is a whole person and it is arrogant of me to suggest she will not be able to live well without me. I know she will grieve and it will we awful for awhile… but she will live and hopefully will thrive.
You ask what you did wrong in life to get this disease. Oh my goodness… you really don’t think that way, do you?! Did children who get leukemia somehow earn that?! Did my sister somehow live in a way that she deserved to die at 56 from breast cancer? Do you believe that somehow the way we live determines how hard or easy our lives are on earth?
This disease is not a judgment on how we have lived. Some of us are saints… some of us – me among them – are sinners. IPF doesn’t care. It’s a disease. A few people get it. We die. That’s it. Not about being good… not about being fair… it just – is.
And finally, you describe it as a wicked and horrible way to die. That, my friend, is some really stinkin’ thinkin’ For most of us, we will either die quite quickly – the heart is often involved – or we can die slowly but relatively comfortably, using the medical tools available to us to make the transition as peaceful as possible.
My family knows my wishes… to stay at home as long as possible, as long as it doesn’t make their living intolerable. To emphasize comfort over everything else. To use low dose morphine to ease my air hunger and relax me and, over time, increase the morphine as needed to keep me comfortable, even if that means being asleep more of the time. Using anti-anxiety medication if that is appropriate.
All in all, I don’t want to die but since I have to – this isn’t the worst way to go. I’ve watched people die after agonizing illnesses where the pain could not be controlled. I would define that as horrible. I honestly don’t think our disease is one of the worst on the list.
You started by saying you are scared. I’m scared sometimes, too. I think it would be strange not to feel scared sometimes. For me, sometimes I can calm myself… sometimes I need the help of a friend or loved one… and sometimes we need someone who doesn’t love us but who respects us to help us sort out our feelings and thinking. It was my great privilege that people allowed me to be that person for them… humbling that people would trust me enough to join them in their inner world for awhile.
You might well benefit from a counselor… or a confidant… someone you trust and who respects you. In this respect, I don’t think it should be your wife or closest friends – because they are unlikely to be able to maintain enough emotional separation to help you sort things out. You may also benefit from a professional because you might be a good candidate for anti-anxiety medication. I heard a good description last night on a TV show where the person derided the anti-anxiety medication as “happy pills” and the doctor said “If you had diabetes, you would take insulin… so why wouldn’t you treat anxiety – which is a medical condition – with the appropriate medicine?”
I’m not diagnosing over the internet or anything… just suggesting that you sure sound like you could use another level of support. If you have not looked into palliative care (I’m not talking end of life hospice care here – palliative is different) you might see if it is available in your area and consider if it might play a role in your life. When it works right, palliative care helps us manage living with our disease and would include your wife in coordinating things to make the rest of your life, long or short time, as rewarding as possible.
Now I’m going to have to step away from the internet – I spend way too much time online – and try to practice what I preach. I need to do my share of the Saturday chores, walk the dog, take a shower, and get ready for dinner and a movie at the neighbors. I’ll be doing all of that using a lot of oxygen… and I’ll probably cough quite often… and I won’t be glamorous… but I’ll be living as well as I can for as long as I can. I might be dead tomorrow… but I’m not dead today.
Now he is gone. Cherish what you have.
Stay well…
Steve
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4 Replies
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I will miss his wisdom.
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Steve,
Thanks for sharing this memory of George. He was a friend to many and an advocate for all. George had a wealth of knowledge about portable oxygen concentrators and shared it freely. George will be missed, indeed.
Sam…
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Thank you Steve, for posting George’s words. The description of “the end” is the best I have heard and it gives me a huge sense of peace. Even after he is gone, George is still “counseling” us!
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Thank you for your responses – we are all on a one-way journey, it’s what we do until that day that matters…
stay well,
Steve
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