Oh the Memories

[Barbie]

whenever I feel sad, I come here to this place with all of you. it is like my safe spot--I know how all of you feel and you know how I feel...some of you know me, and so many new people here have no idea who I am. but I know you love me and understand me just coz...

This is my sad month...I have been getting progressively weepier and weepier this week. My dear husband passed 2 years ago. so hard to believe.

I am so happy overall in my new life, I have a new home, a new love, a new lease on life. I laugh most all the time, and enjoy everything around me. but all that doesn't take away the memory of Lonny. he is with me every day. I am sad to say that my memories of him are almost all bad even now after 2 years. I still see him as a Pals, not as the man I married. I try so hard to talk to our kids only about the happy days and good memories. but in my mind it is all ALS ALS ALS.

I still cant' handle stress well. I avoid confrontation and anything that is upsetting.

I guess it is normal for the memories of your departed to get stronger as you get close to the date of their death. the last few months of his life were so traumatic and emotional--I am in pain just thinking of that time. I am mad...mad that he acted the way he did. mad that he had to suffer so much. mad that I suffered. mad that he got sick. mad that he is not here to enjoy all the fruits of his labor. mad about every thing I did wrong, even though I know that I mostly did good and right during the 9 years he was sick.

even though I feel raw right now, I don't want cals or other widows to think I am still grieving hard after 2 years. I am not. it is softer and faded. but right now, this month it is all sharp and pointy again. for me, my journey with Lonny is like when you look at old faded photos from your childhood...you know it is you and you know the story, you see the smiles or frowns but it is all a little blurry .

Love you all


Bobbi

 

[Manhattanite]

This is so beautifully put. Even though you are hurting, I can see that your words come from a place of health and wellbeing.

We all lived through a major traumatic event that few people understand. I know there are moments and images from the past few years that will be engraved in my memory forever. I also find it hard to remember how life was with my PALS before he was diagnosed. I try to remember our morning routine for example, and it seems like it is something I saw in a movie but that I did not live. All I can clearly remember is my routine as his caretaker...

I do believe it is healthy to indulge in those moments of sadness when they come, rather than trying to stow them away somewhere.

I also understand your connection to this site... in my case I feel it was part of my ALS routine and when I am here giving advice or reading entries I can pretend that I am still a CALS and that my PALS is at home and that I will learn a new trick to make his life better. Sigh.

Virtual hugs to you!

 

[texastc]

Glad you are doing so well.

Your 2 yrs is right before mine, just like it was then. I can relate to most you are saying, especially how it is rawer this time of year. I too have 'recovered', for lack of a better word...but like you, I carry her with me all the time.

I wish you well friend.

tc

 

[gooseberry]

It is funny. Its been 18 months for me. When Steve was sick, time moved so slowly....slowly thru the tasks, slowly thru the night with no sleep....slowly thru the agony. Now time feels like it is speeding by.

I struggle to remember our life before ALS. I wish we never knew that part. It robbed all of us in so many ways..

I too keep being drawn back here. On a bad day, on a good day, it is nice to know you are just accepted. If you rant or support, laugh or cry you know someone here just gets it. No explanations, no excuses, no judgement.

I am so glad we have each other.

 

[affected]

You will always be my hero Barbie - the first CALS to really embrace me here, the warrior princess I watched with awe and fell in love with. The one who named me Tillie

Love you girlfriend. We learn to walk with the limp the scars of ALS leaves behind, but it happened and it is part of us xxx

 

[Jhill]

I totally relate to everyone's comments.

I hate that ALS is stamped over all my memories right now.

Hugs,
Joan

 

[adrivtham]

I am with you all. I find hard to remember my sweetheart before ALS...It is like the nightmare stuck in my mind .. I know is early and the wound is still fresh.
I am having this constant panic attacks, it is so hard to concentrate at work. I miss him so bad. Time probably will help but right now I hardly can breath.

 

[affected]

Many (I'd guess nearly all) CALS suffer a PTSD after their PALS dies.
It's just the truth of the situation - what we witness and do is incredibly stressful and there is a price to pay later.

Anxiety and panic attacks are a common feature. The PTSD surfaces in many different ways, don't ever be ashamed of any symptoms you suffer xxx

 

[vzandt]

It's better than it was. It's been 2 years and 8 months for me. I still miss him everyday. I cried all day on Father's Day....but on his birthday just a little. I still get waves of grief...but I can laugh and mean it now. I'm not so good with stress..or if I'm overtired.
ALS robbed us. It took away our future...because we didn't want to look at our future. It was to scary.i still can't look at the future. I'm stuck in the present. Day by day. Week by week. Year by year.

 

[Barbie]

gosh, I see the screen names here and so many memories come flooding back! you guys are my special friends and hold a dear place in my heart. if I was a praying person, you would all be in my prayers every night.

Tillie I agree I would bet almost all Cals have PTSD. I surely think I do, but I am embarrassed to say that to anyone but ya'll.

Vzandt, I remember following you here--you always seemed like you had it so together and gave such good advice. I am stuck in the present too--I think the past is too painful to look at and the future is too scary even now. Living in the present is a good thing though, appreciating today for exactly what it is. I have always read that most people live in the future too much and don't get the most out of each day because of it. I remember when Lonny first got sick--I was a big planner and I was physically sick when I realized that there was not going to be the future I planned.

Tex, Goose, you guys were right there with me...sigh. love you both.

 

[Neilswife]

Barbie,
Your comment "I am stuck in the present too-I think the past is too painful to look at and the future is too scary even now." hit home with me. I can tell you are healing and that is wonderful but it is just a really long process after going through something like this for us to feel a new normal. My husband passed 14 months ago and I am into year two of grief. I thought it would be easier after the first year, but it is just different. The first year I was just trying to make it somehow past all the firsts and now I am really feeling the intensity of my loss. I do feel that I am better than I was just going through a different phase. Each day I miss my husband so much as I try to figure out what my new world without him is going to be.

 

[affected]

It is so impossible to explain to anyone who hasn't been through this. It is generally expected that you will be sad for a few months, but that's about the attention span of most decent people and after that, most think you will have 'got over it' and 'moved on'.

There was a time in some cultures when widows wore black for a year. I wish we had that - you could be respected and your grief acknowledged. Maybe they grieved better because of that?

Year 2 was worse for me in many ways than year 1, even if it wasn't quite so raw and like I was bleeding out, I think the full force of the permanency of the reality sinks through to your bones during year 2 and it's awful. I wonder how it was for those women when that year was over and they threw off the black - did they feel threatened that now they were supposed to have 'moved on'?

Even though everyone grieves differently, a lot of past CALS seem to find this is their reality.

I'm in year 4 now, which I can barely believe. How can it possibly be that long? I feel that familiar feeling of shock still - how could this have happened, how is this now my reality??? But the raw feelings have stopped, I don't feel like I am grieving all the time, but lots of triggers can bring the grief to the surface easily.

I struggle with remembering Chris before ALS. We had so little time together and nearly half of our total time was overshadowed by ALS and then his death.

I am kind of rearranging my life again. I'm finding that some of the things I used to fill my life up and try to create a sense of purpose are now past their use-by date. I'm finally starting to work a lot better and I need more time and energy to focus on my work and start to pull my finances into line. So stuff that helped me in the early years is being laid aside and the focus my energy is getting better.

Barbie - you have a wonderful way of saying things we all feel. I think the PTSD interferes with us being able to plan a future because we lost the future we wanted, and it's hard to believe any future we plan won't be pulled out from under us again.

But I think if we can live in the present, if we can take a day at a time, then we are winning. Hey still standing up each morning is a win in my books!

Thanks for starting this thread!

 

[Manhattanite]

Neilswife, what you write about the first year being about getting over all the "firsts" rings so true to me and it is what I am living. This weekend I took a trip by plane for the first time since my PALS died, and it was the first time in 16 years that I came home without him by my side or without him waiting for me... and it was such a painful experience. I cried when the plane landed and it no longer felt like I was coming "home." There are so many "firsts" waiting for me... it is overwhelming.

 

[adrivtham]

Today I have big wave of sadness, I am wondering how I can continue living this way. I am not very religious, so I don't find much of help in the prayers. I don't know ...I feel so lost.
When I came back from Colombia was so painful to accept that my sweetheart would never wait for me at the airport... I miss him

 

[gooseberry]

I met with a financial person not long ago. She told me I had to think about the future more and not live in the present. I told her, the future isnt a given, only the present. She wasnt sure what to say. I simply cant consider the future.

My 56 yr old sister is in icu with what started as a kidney infection, then sepsis, and now great difficulty breathing. The future is not guaranteeed. We have all learned that