Last night I wrote a very difficult, very shy post to my Patrons on Patreon. I did not make it public because I just felt so shy and embarrassed, and then someone wrote to me and said “It is NOT ‘TMI’ it’s what you’re going through and you should write about it.” And then I thought, well, I can’t find any books anywhere that speak this honestly and truthfully about what it means to become so disabled you need outside help, even to be bathed, and your whole life and home and work have to be transformed into something else so you can still live in your home. So here is most of the post, and perhaps it is right for me to share it. Only Patrons get the whole post, and I am sorely in need of their support right now so I really appreciate them and can’t thank them enough. I love them dearly. They are family to me now. Here, then, is what I wrote, in the main…
“Tuesday I had PT (Physcial Therapy), Wednesday regular therapy with my mental health therapist that I have seen for a decade, and family had to come over to take some of my furniture I can no longer use and I am thrilled for them to have it but it was saying goodbye to another beloved piece of my home. I mourned, of course, in private. Tomorrow my OT (Occupational Therapist) will be here and today Miss Cassandra came. She is the lady who bathes me which I still cringe over but am getting used to and am very grateful for.
I say “bathe” but I don’t take baths, haven’t in years, and now could not get down into a tub with any prayer of getting back out. Last time she was here I had a shower and she got right in there with me and washed (wincing) everything which was embarrassing but also a relief. But today when she was coming I was so afraid and when she got here I just burst into tears. I could hardly get up out of the chair I sleep in this morning, I was in terrible pain, and it’s not the pain that bothers me as much as my legs being so unstable and shaky I’m afraid I will fall, and this is with me USING the rollator walker. I knew I couldn’t stand in the shower even with the bars they put in for me to hold onto. I just couldn’t reliably stand like that. Cassandra said, “Don’t you worry honey, we’ll get it done.” She had me sit on the toilet, seat down of course, and she very gently washed me, all of me. She had to help me stand up to do the private areas but then she dried me off and helped me dress. She had me sit in my recliner and stretch my feet out and she massaged my feet with lotion and put my socks on. She took such tender care of me I was on the verge of tears sheerly from gratitude.
After she left I sat back down here at my desk, completely worn out, with my legs up (I have a long bench with a big pillow on it so my legs can be raised here) with my heating pad on my back which has been kicking up. (Your back doesn’t appreciate, for one moment, your feet being so uncooperative that you walk wonky and put it all out of whack.) Such are we who are very akin, I believe, to the Dancing Hippos in Disney’s 1940’s movie Fantasia but they didn’t fall down all the time, if not quite what you would call “graceful!” (I’m trying to think back, as hard as I can, to a time when I might have been considered “graceful,” but it is longsince lost in a sea of forgotten memories.)
So it is 8 p.m. here now and I feel like it’s midnight and that I perhaps had climbed Mount Everest today. I am most definitely at the point where I am coming more and more to accepting the finite disappointment, and working very hard to move into that state of grace Dr. King called, “infinite hope.”
I know that as hard as these days are for me there are people in the world in far worse shape with far greater challenges, but you know, when it’s you, when it’s your life, it’s hard to get past the challenges you are having, much less keep in mind all the blessed souls who only wish all they had were your problems. But it gave me to thinking about something and I would really like your opinion..
It occurred to me, as I was writing this, that much of what I have written here is “TMI” BUT good God almighty, I have scoured the internet looking for books on aging and so forth and they are all spiritual, or psychological, or medical and for godsakes, what about us people who are just common, everyday people going through the times when our body is failing us and what we have to do and the help we have to accept and need is embarrassing. TMI? Well, I’m beginning to think the world needs a little more TMI, because when you are getting older and going through various and sundry things that cause you to need this kind of help, well, I for one have found no book out there of someone talking honestly about what they are going through and how they are handling it and what kind of help they need and how they adjust to getting it, as well of course all the things that we still have and that are possible with a change in mindset. I never in my life thought this would be the kind of book I would write but I swear, I think people need it. Let’s not get all holy and la di da about what it’s like to have a lovely lady come to help you and you don’t know her from Adam but have to strip down and have her wash you, including your most private parts. This was not ever something I saw as part of aging. And I think those of us who are going through it need someone to talk truth to us. And I think right now that needs to be me.
The thing that works so well with Pastiche is that individual pages give you a few thoughts or a quote or something you can just sit with for awhile, as long as you need it. It needn’t be a 500 page novel you have to wade through, and it needn’t be a book of psychological or spiritual nature prosletyzing about how you should handle this. You handle this by being afraid. You handle this by crying, and you handle this by finally coming to the point where you feel grateful for the help you need and are getting, one day at a time.
I think this is important, I think this is necessary, and I think that it’s what I’m meant to do. Will you PLEASE give me your honest feedback about this? I almost made this a public post and put it on my website and all over social media because this has been a liminal time and I have finally crossed the threshold. I don’t know how much time I have left on this earth but I am damn well going to spend it telling the truth. But then I realized it was just my bipolary bits and parts that might get me into trouble.
I love you all more than I can rightly say, and if any of you think my work is worthwhile and can be of help or service to anyone, please encourage them to support me at Patreon. I have tried to promote it in every possible way I can think of and I have gone from 22 to 16 Patrons at a time I am in dire need of financial help. I don’t want “free money” I work hard doing this and I am hoping that what I offer for the support that I get is meaningful and helpful. In any case, I believe with all my heart that this is what I was meant to do.
Blessings, Love, and Unending Gratitude forever and always. I’m crying again and feeling embarrassed. I’ll stop here…”
And so I came forth with an embarrassing picture of my life as my disability grows at an alarming rate, and my house has had to be rearranged, and I wonder if I have anything of value to say. But writing has been my way in the world, since I was a little girl, abused and frightened. Writing is what has always saved me. It is saving me now. I pray that I can somehow help others. At least I’m going to try.
