Forgiveness

[Penwiggle]

Hi,

Long before Ezri died, I knew there was going to be an important issue I'd have to deal with during my grieving process. And that was the challenge of forgiving myself. I knew when she was ill that I wasn't the best carer in the world. I knew that I could never be everything she needed or wanted me to be. I could only do my best. So every night for a year or so before she died, when I went to bed I did a mental check-in with myself and told myself that I did MY best that day.

Maybe I'd failed miserably in some task, or got something wrong, or maybe it was a great day. Regardless, I always had it firm in my head that I was doing my best, and each day I strived to do my best. My best according to me, because I knew I could never be perfect.

So when it came to forgiving myself for not being a better carer and doing a better job, it only took 5 or 6 months to work through that issue. We do like to blame ourselves, don't we.

Another issue around forgiveness presented itself to me this week, and that is the issue of forgiving Ezri.

The thing with a terminal disease, where you know you're going to die and have time to prepare for it, I guess I was picturing a very 'PS, I Love You' scenario. Where the person dying transcends their impending situation and thinks about the people around them, and seeks out ways to help them through the grieving process after they are gone.

And even though Ezri did thank me for being her carer, even though I know she appreciated all I did for her, all I gave up and lost, it never felt enough. I wish she had given me some words to live with for after she died.

But this week, I realised, she was just doing her best, by her, during those 2 years of Hell, just as I was doing my best by me. I put as much of me into putting her first as I could, and I know she did the same towards me and her family. So I've learned to forgive her for not living up to my expectations, and appreciate she was an amazing person that went through a horrific situation.

Be kind to each other. xx Pen

[Gillette]

Hi Pen,

My goodness, love beams out of your post. You and Ezri obviously had a very special bond, which not everyone manages to achieve. I am so glad for you that you have recognised your need for forgiveness and have found it. Doing one's best is exactly the most that one can do.

When I told my husband he was terminally ill, I saw the fight leave his eyes. He had battled for his life and survived far longer than any doctors had imagined he would, but he'd had enough. Telling him that dreadful news gave him permission to stop fighting - which he immediately did. Although I didn't want him to die, I understood and reluctantly accepted that it was his choice to make.

What was infinitely more difficult for me was what he did next. A few hours after I had given him that news, he rang all of his closest family and friends, explained his situation and said he would like to see them. Consequently, for the entire period from then until he went into hospital, we had a constant stream of visitors for him. I resented that he had the energy to get up and dressed and go out with them (I would also go) but, when it was just the two of us, he would be asleep most of the time. I wanted to spend that time alone with him. It took me a long time to forgive him and to understand.

Live peacefully with your memories of Ezri.

[Lynne K]

Pen, what a well written summary of dealing with relationships at this difficult time. About 'be kind to each other.' I always try, but my hubby sometimes lets rip verbally at me, very cruelly. I've tried to explain how it's not appropriate, hurts me unnecessarily and that there's better ways to resolve differences. I prefer to talk. He apologises but does it again when things don't go his way. I guess that it's not mnd related. It's just that I can't take it any more and he can't help himself. Lynne xx

[Penwiggle]

Dina,

There are some people that used to be good friend's with Ezri, that she had a falling out with over the years. She refused to let any of us get in touch with them while she was a live, and consequently some only just recently found out she was ill and died, and she's been gone 8 months now. It was hard on them, and I caught much of their flack and frustration.

I think, if I were terminally ill I would be more concerned about the people around me, but obviously I really have no idea and hope I never do. Ezri tended draw those close to her very close, and pushed everyone else away. That was another thing I had to forgive her for, and am still picking up after to one extent or another.

Lynne,

It's not easy. Ezri got angry at me a lot, and would tell me how she felt in no uncertain terms. I'm a very calm and calculated person, and rarely get angry. Which frustrated her because she would want me to explode, to let it all out. But I'd go ultra calm and discuss things, which would wind her up more. I understood she was angry; angry at the world, at having MND, at not being able to do everything she wanted, and most of all having her life cut short her in mid-40s. It was tough being the one that caught that anger, but it was another of the services I provided. I let her vent at me.

It wasn't easy, and I don't know how I got through it. But I did. Try not to take things personally is my best advice.

Pen

[Kayleigh]

Hi Pen,

I think it was very unkind and unfair of some of Ezri's friends to blame you because Ezri didn't want them to be told about her diagnosis and she didn't want to get in touch with them again.

It was Ezri's decision to make and they had no right to expect you or anyone else to over-rule her decision. For whatever reasons, she decided she didn't want to see those people and did not want them informed about what was going on in her life - and in my opinion you were absolutely right to respect her wishes.

If those people are finding it difficult to deal with then they need to try and think about it from Ezri's point of view rather than feeling sorry for themselves and taking it out on you. Ezri might have found it difficult to deal with lots of people contacting her or visiting her - sometimes when people tell us what they have been doing concerning their social life etc it can be a painful reminder of happier times and a lifestyle we miss terribly because MND is snatching it away from us. Also, Ezri might have only wanted those closest to her to have memories of the way she was after her diagnosis. These are just my thoughts and of course Ezri might have had many other reasons why she pushed people away and wanted to stay in touch with only those closest to her. Whatever her reasons, you did the right thing by respecting her wishes and you should be commended for that rather than being criticised.

I am guessing that Ezri was a very kind and polite towards you before she had MND and it was after her diagnosis when she was rude and ungrateful at times. Hopefully, in time, the painful memories will fade away - and you will be able to focus on remembering her as the loving, caring and kind person you truly knew your sweet Ezri to be, during the many happy years you shared together.

Love
Kayleigh x

[Lynne K]

Hi Pen. I'm similar to you, the calm, patient and caring one. But I'm the one with MND and when the sunami of anger out of the blue hits me in the face I no longer have the strength to deal with it. When I try to say calming words I cannot get them out quick enough because of speech issues before another sunami hits me. This has got harder and is dreadfully upsetting since he takes advantage of my difficulty to score verbal points. I would never join in exchanging insults. It's not who I am. But I'm a sitting duck Lynne

[Penwiggle]

Kayleigh,

Yep, pretty much agree in regards to Ezri's friends. But, such is life.

I have gotten past the bad feelings and memories. Memories of good times are coming back, slowly, but they are coming back. While Ezri was ill I had started writing a book about the experience, but what I wrote then was all about what was happening then, and it was quite negative. I'm hoping to pick it up again next year, and be able to write about the good times in our friendship to bring a balance to it. Healing is a slow process.

Lynne,

Big hugs. One thing I did find was that it was very difficult to argue with Ezri and stay emotionally charged. She would type a sentence or paragraph into her computer with her eyes, which would take a few minutes, then she'd press 'speak', and the computer would say it. I'd then respond with one or two sentences, but then be put me on hold while she typed a reply. Made for very long and slow arguments, which meant they often calmed down quickly. She could stay mad, but I never could.

If your husband is taking advantage of your not being able to reply quickly, and is essentially talking over you because of the MND, then I'd raise it with him and let him know he needs to give you time to speak. That's just rude.

Pen