Spreading the News

[Lolo]

Hey, everyone. I posted a few times a few years back. It's been so long since my last post (although I do still "lurk" on the forum from time to time) that I forgot my user id and password and apparently used a now non-existent email address so I had to re-register . . . .

Anyway . . . . my doctor's working diagnosis for me is MMN although, like many, I may also have ALS or SMA or some other MND or motor neuropathy. As the symptoms of whatever this disease is worsen, I am more frequently confronted with when, what and how to tell people what's going on with me. Of course, my close friends and family already know something, but the group that knows the worst of it is pretty small.

I am a bit reluctant to send out a mass e-mail telling the world (or, at least my small part of it) all the details of what is going on with me. However, it is also difficult to not say anything, particularly in the face of, well, everything that's going on with me. Do I just explain to a friend I happen to meet on the street after not having seen each other for a while why I can no longer walk unassisted? Or announce at a dinner party why I've brought my own super sharp knife to cut the pasta? Or explain to the other students in a class why I never take notes? Or do I instead ignore the issue entirely?

Sending a mass e-mail alleviates the anxiety I have about how I present my ever-diminishing physical self to the world and also prevents me from having to have the same difficult conversation over and over again but it also seems to have an element of drama queenishness to it and could be misinterpreted as a grab for sympathy which, as deserved as that may be -- the sympathy, that is -- isn't something I necessarily want to solicit, perhaps not at all and certainly not en masse.

Argh, it's a bit complicated, yes? *ack

I imagine a lot of you have struggled with this issue. I'd be so very happy to hear your individual and collective wisdom.

Gratefully,

"Lolo"

[powder pig russ]

Lolo

I venture that yours is a typical reaction to the continued frustration of not getting answers that 'fix' the problem. Our Western minds have become so conditioned to getting answers that enable us to control our destiny/environment that it is hard for some of us at times to accept that there may be some mysteries that forever remain unresolved. It's probably all a part of the grieving process (remember the 5 stages?) until we arrive at acceptance.

I've learned to accept the fact that I'm forced to use a wheelchair if I want to get around beyond the end of my property line. I've grown to accept the unknowns of my progressive deterioration as part of the beauty of life even though at times it painful to let go of those things so dear.

Is the pain and loss of a dear friend moving to another country much different than the loss of the ability to walk unassisted? Neither occurrence may be inevitable or desired but does the loss take away from the joy and delight experienced while we were together? No. Do I replay those moments of running after tennis balls? Yes. Do I wish to do it again? Of course. Do I allow the missing ability to ruin my day? Not any more. There are other things that need their turn (red traffic lights, copiers that jam, burnt toast, etc.) and, of course, there has to be room for those things like cutting my own food that stake their place before they too can be 'accepted.'

I used to let such things ruin my day(s). The fellowship of friends who'd listen to my emotional pain was invaluable. But as my mother pointed out a few years back, "That's why there are therapists and counselors so you don't have to bore your friends with your troubles." I call them $100 friends. I think most of my unpaid (true) friends want to know more about me (books I've read/written, dinners I've savored, etc.) than the trivialities of my daily (self evident) frustrations.

The only inevitability about 'loss' is that it is a part of life. I've come to a greater appreciation for the beauty of life including loss. The swelling of emotion of joy (tears and all) doesn't seem much different than the swelling of emotion of loss in such a context. The same bloom that is one day exquisite of sight and odor still retains the beauty of its role in life (and death) the next day when it has begun to wilt and fade. Does the fading blossom detract from the beauty of the one next to it that is now at its peak? Esthetically, maybe but that peaking bloom doesn't care. Does the faded blossom care that it's no longer at its peak?

In peace and health.

Russ

[Peg B]

Hi,

I never have written a "Christmas Letter." But I did write the following one for XMas 2006. Those who wanted more information asked, others did not respond, but I felt better. I sent this in the XMas cards which I signed by writing on clear computer labels and pasting them on Christmas cards. Something like what is written below may be sent in an email if you like. I know I felt a weight off me, when I did this. The close family and friends were told in person or by phone. Take Care, Peg

In the spirit of no news is good news, I bring you news. On Halloween I was diagnosed with ALS (Lou Gehrig's Disease). Most fortunately this was NOT confirmed at the University of Michigan ALS clinic. However I do have some form of a Motor Neurone Disease, but it appears to be a very slow form. I am to have more tests. The good news is it is slow and right now really only affects my right baby finger which I cannot move sideways and I have some weakness in both hands. I am currently on sick leave and will retire as scheduled by the end of June with more than 36 years.

[Lolo]

Thank you, Russ, for reminding me that it's all about accepting what is, and Peg, for a wonderfully short and sweet example of a possible "post." I think you are right, Russ, that it is more comfortable to hang with people that are not focused on the disease. On the other hand, it is easier for people to do that if they get their questions answered and thus out of the way. To both of you, I really appreciate your insights. Thanks for responding.