Oh the Memories

[Neilswife]

Manhattanite, The "firsts" are all so difficult, but I felt an enormous sense of relief when all the firsts were over with. Of course that was replaced by another feeling of the intensity of the loss, but I feel it is something I must go through to process my grief. You are doing exactly what you need to do though to make it through those firsts and that is feel them no matter how painful they are. Don't be overwhelmed by the firsts -- just take them as they come one day at a time.

 

[Neilswife]

Gooseberry,
I am sorry your sister is not doing well. I hope she will soon be feeling better. I know how hard it is to have family ill so be sure to take care of yourself (and it sounds like you are). You are so right about the future not being guaranteed, but that is true for everyone, it is just we got a big reminder and can no longer live our lives pretending we don't know that.

 

[Atsugi]

Well, hang on to your hats. What I have to say will either help you to know that there is life after being a CALS, or it will convince you I'm an insensitive a$$.

I'm a planner, so even though ALL of my life plans were ripped to shreds by ALS, at least I could enjoy the process of planning a new life, integrating the new life lessons into my philosophy, and finding a new career. I went to school to become a helicopter pilot. (Blood pressure killed that dream.) I went back to college to get a second masters to help me get promoted at work. (But I really couldn't stand being in class surrounded by "normal age" students, so I quit.)

For a year, I was sad in bed, thinking how horrible it was that Krissy's life was stolen away from her. (Then I decided to PLAN for ten minutes of grieving at bedtime.) Soon, I no longer needed time to think on it anymore.

I quit work, so my kids would have dad every hour they weren't in school. Shouldn't have quit, HR would have worked out a solution.

Sitting around moping nearly killed me. I got weak, fat, high blood pressure, and pinched nerves in my a$$, Spent a lot of money to make me happy.

I am very happy to take antidepressants, and see a shrink monthly to BS with him about the old days when he and I were in the service.

Now, six years after ALS, I have a solitary life. I might consider dating after I lose a lot of belly. Daily, I'm very busy, and go to the gym. Travel yearly overseas. Very happy. My memories of Krissy are nearly all very happy. No more bad dreams.

Wishing you all the best of futures. You deserve it. Your PALS would like to see you happy. Barbie, I'm glad to see you've got a good start.

 

[affected]

I think it's important to really feel all those 'firsts'. I learned to go with the grieving. I've always been a strong 'soldier on' type, but I learned to recognise that a day was going to be crap and just drop what I planned and go through a crap day.

I remember the feeling I used to have hit me quite often when I would come home, just as I would open the door and walk in to such an empty feeling house. What is most interesting is I remembered that so clearly when reading what Manhattanite wrote, and at the same time realised I don't remember when I last had that feeling hit me.

So in year 4 I am finding some true changes. You will get through this, it will be far harder than you imagined, and it will hurt like hell. But do what you have to do.

For me it was being a bit of a maniac in the gardens and the regeneration of the property. I could hide away and bury myself in these things as I grieved and slowly healed.

If you can find something, anything, that you can put energy and yourself into, do it. But do what works for you - don't do things because others tell you to. I have been told by so many people that I'm mad to stay here 'alone' on this property. Do they not realise that if I sold my dream property and moved into the city I would not be 'alone' anymore? That won't magically bring Chris back and the loss of our soul mate is the issue, not where we live.

We certainly have learned that the future is not guaranteed, and I don't think we should forget that either!

 

[Staying strong]

Coming up on a Year and a Half for Me.. it's getting easier to remember Lizzy pre-ALS but at times I have to fight to keep the Picture in my head of her last days.. Thinking of You All..

 

[lgelb]

Very sorry to hear about your sis, Steph -- how is she?

My "first" coming up this month isn't one, but it would be our 35th wedding anniversary. We got more time than a lot of people here did, so I can't complain. But since Larry was born with Marfan, we never had an illness-free/he never had a pain-free day, which bothers me at "anniversaries" more than other times.

As for the future, that is opaque and uninteresting to me as well. It will be here whether I like it or not, but my zest for trying to shape it seems to have left the building.

 

[gooseberry]

She has a lot of kidney damage. Apparently IGa retained in the kidneys isnt good. Her doctor seems to be on the ball though.

ALS firsts bothered me much more than Steve. I try to embrace his spirit in these matters. I had to make a conscious decision for ALS to no longer control my life....that my life mattered too. It is hard to accept after all we go thru as a cals. Photography is a hobby I have gotten much more serious about. It brings me calm, peace, and joy.

 

[Barbie]

All the firsts were so hard--I am so glad to be past them. so now I am starting year 3...that is depressing just to say.

I am going to make it...of that I have no doubt. overall and in general I am happy and even grateful for the life I have had including getting to care for Lonny. I didn't feel very grateful while it was going on but now I am glad that I was able to be by his side and care for him. I am also grateful to be moving on, to have new adventures ahead of me (what ever they are I am not planning them LOL). One thing about not looking ahead to the future is that you are willing to take more risk and enjoy the moments you have today, BUT on the down side, when you are carrying PTSD from a terminal illness as we all do, that stress and anxiety hold you back

with much love,

Bobbi