Haunted

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Lenore,

I’m glad your friend was honest with you about her feelings. I don’t want to see you get hurt again, and it will given the circumstances. I’ll just be keeping you in my thoughts that your heart is somewhat protected.

Hugs
 
Sue,

You are both right on the hurt part. Not hurt like Brian, nothing could hurt like that but eventually, loss yes. Still, I cannot imagine trading a moment of the joys I have felt in reestablishing connection with D., or should I say contact. Some connections are never truly lost.
 
Nor should you trade those connections.

Hugs
 
In case you couldn’t pretty much tell from this thread already, D and I have evolved into a long distance resumption of our relationship. We communicate throughout the day, every day. I’ll be there next week for a four nights, three days and plan to head to Seattle monthly for the duration unless something changes. As with many later stage PALS, it could be a month for him, could be a year. His lungs are still going strong (100% on 02 sat!) , his troublesome recent infection blasted out (it was cellulitis, not blood or lungs as first thought). Foot sores persist, so that’s an issue. Most speech and walking is gone. Feeds himself still. Diagnosed in May of 2015, he lived alone with help from caregivers until last Fall, when he transferred to the assisted living/end of life care facility. It was just then that he stopped teaching online classes due to speech issues. He still writes essays on his life and his art And enjoys a massive music collection (he was a musician as well as artist).

I am sure this all sounds perfectly bonkers to most, particularly to most CALS current and former (I do not consider myself an active CALS now, btw way with D. His sister oversees things locally and I am not responsible for caregiving). This is a very different situation from my late husband, but essentially D is the other love of my life, he was the biggest deal outside of Brian. When he found me on birthday (the one he’d remembered for decades), we reconnected quickly. I really looked into my soul for was this really all about Brian and ALS. It’s not. Truly, there is no other X and no other person I’d put myself here for again with those nasty, nasty disease. D is the second person in my entire life I have said that I was here for until he breathed his last, albeit in a very different context. Love gives me no choice, and I am really very happy in that love for as long as we get to have it - days, weeks, months. I’d be shocked if he goes past one year, but we also know that ALS is just about the least predictable condition humans get.

So, here I am. Former CALS, current mostly long distance partner. The odds of any of this happening were only slightly greater than winning the lottery. Yet here we are. If you think I’m nuts, its because I probably am. I’m happy though, and would not, could not make another choice. As the saying goes, love is love.
 
Good for you Lenore! How sweet to have two special loves in your life. I hope you have a wonderful time out west with D.

Jon
 
Lenore I am thrilled for you to be able to just be a love and partner to D during this time. I so wish that would have been availble to me. Basically losing the partner part was the hardest. Enjoy the time you have.

Hugs
 
I hope you and D enjoy your time together. I have past relationships with people that I would want to spend time with during the final year/years of their lives. And it wouldn't be because of a particular specific disease. D sounds like a really neat person! I hope you are able to enjoy music, writing, the arts and anything else that you both love!
 
It’s so true that my “position” of being lead aide/care manager for Brian completely changed the relationship, or at least really cut into it. Add that to the physical realities of ALS and in some respects we were just altered beyond recognition In those last 16 months or so.
D and I have an opportunity from all these miles between us to enjoy more things together sometimes, oddly. The extensive music collection being just one! Seeing immersive Van Gogh here in Minneapolis and sending D video from that was great. Now, I get to go to Seattle and we get to spend time together with others doing the care.
Don’t misunderstand, Brian and I had some remarkably good times together in the last odd 14 months of his steep progression. I will be forever grateful for those moments where from his bed he said “just come sit down and let‘s enjoy each other”. It’s just more difficult when you also have to be the caregiver.
 
It was an absolutely great weekend with D. I cannot say enough good things. It really is great to be the partner and NOT the caregiver. I truly wish I’d had that great luxury with Brian, and while I respected and supported all of Brian choices around his condition, life and death I am loving how D. Wants to live With ALS. So, here I am am, a former wife and CALS, now a long distance partner to another person with ALS. Downright weird, I know and I understand those who question my choice. It should be noted however that this wonderful man was my first love, and sometimes “choice” is a relative term. I found our connection ran far too deep for me to even consider NOT being involved now.

I’ll be back in Seattle twice in October, can‘t wait.
 
Lenore,

I am thrilled you had such a great time with D. That warms my heart..

Hugs
 
Fabulous Lenore!
 
Glad the relationship is going well! I bet you didn't expect to be doing all this traveling at this point in time!
 
That is true! In a way it’s a good time to travel though because with few international travelers the airports are more quiet.
 
Lenore,

After my husband died, shortly after our 50th birthdays, I continued my volunteer work with ALS patients and their families. After about 1 1/2 years, I realized that saying I had lived through ALS wasn't enough for me and went back to school and earned a master's degree in social work so that we could establish a multidisciplinary clinic devoted to ALS. Shortly after the 2nd anniversary of my husband's death, my college boyfriend reached out to me on FB tell me how sorry he was that I had gone lost my husband to ALS (he had an acquaintance that had died from ALS). He had just heard about it. We hadn't seen each other or spoken almost 30 years. We talked on the phone for about a 1 1/2 years and then he came to town. That was it, except that I couldn't move. I had the clinic and my patients. He picked up, moved here and has supported the work I do for 7 years. I love him beyond measure. It takes nothing away from my love for my late husband, it quite simply gives it more meaning. I loved and was loved enough to move forward. I truly believe that the human heart does nothing but expand.
 
Thank you Miss. loving my time with D. for however long that is.
 
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