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I've started a list of what I'll need to bring to the hotel. Of course I'll figure it out, because I
simply have no choice, but I'm struck by the fact that I'm really not very
mobile these days. I'm going to go to
the hotel with Cara so I'll have been in the space once before going there to
stay. It won't be the same as staying
there, but at least will give me a taste.
I began sorting through some things that have piled up
over the last few years. Due to my
disorders, I'm not nearly as organized as I used to be. I came across a binder which goes back to
when I sang occasionally with a group of friends. Another one from when I sang with our
congregational choir. I also came across
various stuff from when I taught flute.
Finally, I saw a folder that goes back to a band I used to play in. When I first developed hand troubles, I asked
the band director if he wanted me to return it.
He emphatically said "no" (thinking I'd be back soon), and
then he left and a new director came along.
I never spoke to the new one, and so there's the folder. Somehow, I just can't bear to ask if they
want it back.
After this sorting, which was difficult not just emotionally,
but visually and balance-wise, I went up stairs and responded to my daughters'
query about an outing of hers the next day.
I said the TV was distracting me from being able to think, and left the
room to attend to my dinner, and then when I returned I told her how I
felt. While in the kitchen, I had
decided that sometimes it's OK to respond not just as a mom, but as a person
who has health problems that impact my life.
So I was honest with her. I told
her about my sorting, and how hard having a social life is because of my
disorders. It also happened to be when
Ron was out for the evening, and I was missing a congregation event because I'd
been out in the morning. I can't do two
outings in one day!
I managed to talk to my daughters without tears - despite
the honesty of my words, I didn't want to burden them with my emotions. So, I went into the bathroom - I'm often
struck by the times I end up there - and my emotions came over me in
waves. I asked myself how to turn this
into something positive, and then I thought "I can't, sometimes I just
can't." People wonder about my positive
attitude, and mostly it comes from music, and connections with others. But sometimes, sometimes I just can't see the
positive. All I can see, all I can feel
is the pain. The pain of what was
supposed to be happening in my life.
"Supposed to" can be a dangerous phrase - along with the word "should." But the glaring reality is that it hurts like
hell sometimes to get reminders of what I thought I'd be doing. No, I haven't given up the ghost on teaching
flute. But it's a long journey with a
lot of unknowns.
I decided the other day that I'd set up our electronic
piano/keyboard and "doodle" on it just as I do on my flute. I don't know how to read piano music, but
that really doesn't matter. But that
doesn't take away the pain. It doesn't
take away the loneliness of how difficult a social life is with my
disorders. So I let the sadness soak
through me. Sometimes that's really all
I can do. It's the only way to be able
to get up and take another step. To let
myself feel those moments when taking another step feels really, really hard. I tell myself I'll get through this. I also know two basic truths:
1) The reality is that I have invisible disorders that
have changed my life, and I have to live with that reality.
2) If I want to see more than subtle change, I have to
take a pretty long view.
I have to recognize that as hard as this is, maybe I
couldn't have done it a year ago. Give
myself credit for pushing through this. I
had to box up my sewing machine, and sewing supplies. Sewing is way too difficult for me visually. I don't know what I'm gonna unpack once the
basement is done, and I'm not going to think about that right now. I'll allow the pain when it's there, and get
through this one piece at a time.
So very sorry to see all you have to go through at this time but you are a very brave woman to have learned to face this illness. Best wishes to you and yours from another person with these problems but I am older than you and feel so sorry when I see the younger people have to deal with this.
ReplyDeleteThank you so much for your kind words Kathy!
DeleteTamar, your blogs are always an inspiration to me and I have learned from you. For one thing, I've learned that I am not alone in this. In my case, instead of vision impairment, along with my bilateral balance impairment, I have bilateral hearing loss. It happened suddenly in two vertigo episodes 3 years apart. I, too, find myself mourning the loss of independence and enjoyment of social gatherings. I, too, must limit myself to one "event" a day. I've blogged about it but am discouraged that it seems to me that family and friends have not read or tried to understand.
DeleteThank you for sharing... impairment of any of our senses is so hard... so glad my blogs help you - thanks for reading!
Deleteyes Tamar I totally agree life was not supposed to be like this There were a lot more years of enjoying my child free years. I try to concentrate on what I can do not on what I used to do but it is hard
ReplyDeleteThank you for reading and commenting!
ReplyDelete