I don’t think of it as a negative. Well of course it’s negative, but I think it may simply be a message to continue ALS advocacy for research, help for families. This may be over for me personally, but for so many it is not over and there will be many more to come.
Moving forward to the day the Dr. Can say more than “I’m so sorry”.
Thanks everyone. I’m in communication now with my long ago, now hospice resident former boyfriend. We are sharing stories of the old days, he with eye gaze technology and also copies of his writings from a few years back on topics like Summer of ‘82. He said connecting with me this way is really helping bring him out of his current situation mentally and into his youthful mindset and memories. Glad to help.
Two years ago in writing about his memories from 1982 , my former boyfriend described me as “A Goddess in red, with golden blond hair, clear blue eyes, and skin that looked like she was made alive from ivory”. Ahh, 17 year old me, not all that , but still an experience to hear about my 17 year old self through the eyes of another. The “red” was a satin toga gown I wore to a Halloween party. I graduated high school that year (a year early) and made the toga of silk satin that my mother had left over from a gown she’d made for herself.
I told a friend about this contact and she instantly became concerned. “You two are e-mailing? He’s out of state right?“ I said yes, absolutely in Washington. She was worried It would raise bad memories for me. She was a CALS for 9 years, and I think her road was harder in a lot of ways than mine. It lasted a lot longer, and they had a ten year old still at home when her late husband was Dx’d. It is her belief that virtually everyone that the beast touches is viscerally traumatized on some level and we need to be careful. This is from a person who remarried and lost her PALS a decade ago. She still volunteers for ALSA though. Point taken, and I will be careful.
My surprise contact further motivated me to get my registration going for this years ALS walk, start checking into plans for the annual gala and if it is happening this year or next, and check into using my volunteer day through work for ALSA. Yes, I’d have done all that anyway but I got going on all of it now. I keep saying - this disease needs people who understand it up close to stick with raising funds, volunteering time. The mods here are good examples of that.
I think your friends concerns are valid.
I also think that only you can decide what helps you through your grief and that is valid in a way only you can know.
For me, supporting others (I run alone, and co-run 4 ALS related private FB groups) has helped me in ways I don't even try to explain to anyone as it is so deeply internal. It helps me make sense of what I went through, if I can give a hand up to anyone else coming behind.
I actually feel like I am getting back in touch with my young self (17!) through the correspondence between D and I. It is helping me remember who I was before the past five years happened. I have said before that losing Brian challenged my identity. Talking to D is making me remember the seed of the person I became. She was sort of messy and chaotic at times, but she was fun and loved living too, and she is me.
In addition to loving my correspondence with D., I think in a roundabout way it might have helped me to do something much needed in another situation: set boundaries.
I have a long time friend who got sort of hell bent on a path of self destruction and frankly her husband in some ways is pretty enabling. He got mad at me me because I gave some opinions. I told him the reason I was not coming around now is because I just did not have the will, desire, or bandwidth to watch. Too much water under the bridge for me these past five years for a front row seat to yet another loss.
I realize that might sound paradoxical, when I am in fact corresponding with a terminally ill person. Yet seeing him there, loving on life and keeping his mind going inspires me - and at the same time makes me less tolerant of another’s self destructive behavior.
I have a hard time these past two years since Brian died and so many things happened in general since 2016 saying things like “I have limited bandwidth and I am still somewhat damaged”. It was very freeing to me to speak that truth. I’m actually just starting to find some sense of normalcy again, and realizing I owe no apologies is awesome.
This morning, another random thought: For years, I have been haunted by the knowledge that my Brian died unable to move on the floors he had laid, overlooking the garage he had built. This morning I thought, yes, and he also died in the home with the woman who loved him more than anything in the world, and today I fill this home and this same floor with new life and fresh memories that he helped to make possible.
I credit in large part these past ten days I’ve spent corresponding with D. If he stops tomorrow, I would understand completely, but between getting back in touch with young me and seeing someone with ALS from my own past continue to create, its just a whole new perspective.