Never mind George Orwell’s 1984, Big Brother Facebook has taken its place.
As many of you already know, I had planned to merge Written in Faith Publishing’s (WIFP) Facebook page with DisabilityPride.net’s, thus allowing WIFP followers to be automatically notified of its closing and to automatically invite loyal readers of WIFP to now follow DisabilityPride.net.
But Facebook apparently has different ideas. Rather than recognizing that followers of both are mostly following me and my work, Facebook is mainly looking at each as two different subject groups. Fair point I guess to some extent, only not really, because their view eliminates one big “elephant in the room” – ME!
No, I’m not commenting on my physical size, but both pages are locked to my heart and soul. I cannot be separated from either no more than the Son can be separated from the Father; no more than we can be separated from our creator; and no more can we live without air to breath or gravity to hold us on this planet.
WIFP has served its purpose well and needs to take rest. WIFP needs to let its offspring (DisabilityPride.net) take the reins for the next leg of my life’s journey. Two separate Facebook pages have become redundant and it’s time consuming to keep both, but Facebook doesn’t understand these things.
No matter though, because Facebook’s narrow-minded stance gives me the opportunity to personally invite each one of WIFP’s followers to unfollow WIFP and to now follow me on DisabilityPride.net.
I will leave WIFP’s Facebook page up until 12:00am on July 15, 2018, to allow you time to unfollow the old and follow the new. After that time, WIFP’s Facebook page will be permanently deleted.
Please continue your amazing support by following me on DisabilityPride.net on Facebook and/or www.DisabilityPride.net
Thank you, one and all, so much for your steadfast loyalty of WIFP for these last 18 years. I cannot truly ever express my gratitude and love.
“Plans are underway to merge Written in Faith (Publishing) with DisabilityPride.net. Please continue your amazing support by following me on DisabilityPride.net on Facebook and/or www.DisabilityPride.net Thank you so much for your steadfast loyalty. You are awesome!”
As I wrote the above words earlier today, I suddenly felt that I was/am saying good-bye to a very dear part of my past. According to Facebook (and who doesn’t believe Facebook, right) I founded Written in Faith (Publishing) in 2000 and that sounds about right to me.
The years haven’t always been kind to WIFP. Along side me it’s gone through a lot. As I went through “having to be a wife first” in supporting my then husband through numerous medical crises and emotional support; then a few of my own medical crises; my divorce; and so forth, WIFP suffered severe neglect and much needed attention. It’s sad but it was unavoidable. Still
WIFP was always there with me, through the thick and the thin. It was by my side and in my heart always. Now, now it’s time to “Let It Be.” To let it rest and be remembered with immense love, pride and fondness.
Yes I feel moments of sadness and sorrow. It’s akin to saying a final good-bye to a very special relationship. But WIFP will live on through its offspring www.DisabilityPride.net, so in that respect I will never really be apart from it.
Thank you my dearly beloved WIFP. Be at peace always.
Lol. I have no clue as to my title choice or how one of Steinbeck’s classics ties into it. The thing just popped into my head and stuck. So there you have it.
I’ve been debating whether or not I should write this particular post, thinking it might be just a tad too personal. On the other hand, it may benefit some as a reminder that often we may expect just another tad too much of ourselves and that we all need to look after ourselves better. If we don’t, we may be of no help to anyone.
In the wee hours of Saturday, June 2, I woke up in excruciating pain. I felt as if someone had sucker-punched me in the lower right side of my back or took their steel-toed boot to it. No matter which way I turned or moved nothing helped and I had to wait for my attendant to come. It wasn’t even approaching dawn yet, so I knew I had several hours to wait. Luckily I have a very high pain threshold and because of what I had been through with my gallbladder a few decades ago, (which was taken out in the end) I remembered how I got accustomed to managing extreme pain, so I applied similar techniques on this morning.
As I lay in bed for the next few hours, I had time to think about several things and I’d like to share some off them with you here now.
The first extremely important thing I want people to know and never doubt, is that I am living my life pretty much exactly as I want to. Am I taking some risks? Yes, of course I am, but I have thought long and hard about those risks and I, with all my full mental faculties, am choosing to take those risks. We all take a thousand risks every day. I knew a woman who when getting up one morning, slipped, banged her head on her nightstand and died. Risks are everywhere.
Once I am in bed, I have no means to contact anyone. I can not use a phone of any kind. I don’t understand why with all our technology, there can’t be a voice activated phone. But even if there was, I’m sure I couldn’t afford the monthly mobile phone rates; and those “I’ve fallen and I can’t get up” thingies costs around $300 a month. So, I am fully aware that yes, something could happen to me one night and that’ll be that. I’m also fully aware that some do not understand this as my choice of living, as opposed to living in some group home, or chronic care facility, or even having a roommate; but those options also come with risks – risk of abuse, risk of neglect, lack of freedom, lack of control/direction/choice of one’s lifestyle. No thanks. I can sleep quite soundly knowing that the risks I’m taking I consider minuscule and yes, it’s worth it, to me anyway.
The only thing I would feel badly about/for is whomever my attendant is that morning who comes to get me up and finds that they will no longer need to come to get me up, ever again. Yet in those initial moments of their shock, distress and horror, I hope that they will, within seconds, remember the very words I’ve just written here and then say aloud: “She lived her life pretty much exactly as she wanted to.” Then once all the necessities are dealt with, I hope my attendants and all who understood and supported my life’s philosophies and choices will gather together and celebrate their own awesomeness. For it is only with the assistance of these incredible people can I make the choices I do. Mind you, I sincerely hope “that morning” is still decades and decades away yet. I was once called “selfish” and told that I don’t appreciate my attendants, but I took into account the source and the circumstances under which it was said, because anyone who has ever seen me with any of my attendants instantly sees how much I value them.
Laying there that morning I also had time to figure out that I was likely dealing with a kidney stone or stones. I’d never had one before, but I know people who have, and they described their experiences pretty much exactly as what I felt that morning.
When my attendant opened my door, I called to her and as calmly as I could. I told her I needed to go to emerge and explained what needed to be done to make that happen. I felt really bad for this particular attendant because she had just spent about 10 days at that hospital while she was losing her much beloved grandfather. His funeral was only 2 days prior to this morning. Now she was going back to “the scene of the crime” and although it was extremely difficult for her to be there, she handled herself with such grace and outward calmness. I was/am immensely proud of this young woman. She has matured immensely in the year+ since I’ve known and hired her.
The emerge staff were AWESOME! I spent some 10 hours there and all throughout I felt I was in very good hands. I often hear people complain about our health care system, about the long wait times, etc., but I often wonder if those are the same people who complain that it’s too hot on a beautiful summer’s day, or about all the traffic at rush hour. Now, I’m not saying that I’ve never gone to emerge and wondered why I bothered. Of course I have. Nothing is perfect. But by far with most of my rear trips to emerge here in Halifax, I can honestly only say good things regarding the treatment I received and those involved with it.
On this day I had a really nice male nurse, who suggested I be wrapped in a protective bubble when I told him about my and another attendant’s “near electrocution” when my hairdryer fell in my toilet only the day after my birthday and this emerge trip was only two days after that! lol. The Dr. was also great. He checked pretty much everything – my kidneys, my pancreas, and liver, with an ultra sound and some other kind of TC scan. I was reassured over and over again by all involved emerge staff not to hesitate to come right back if things got worse.
Because of the length of time, I asked my first attendant to text my next coming attendant to have her meet us in emerge and so she did. Both of these attendants were so awesome, both in their own way and I send special thanks to Kris, (I know it was extremely hard for you to return there so soon after losing your grandfather.) and to Maggie, who’s genuine concern I clearly saw and felt, in her direct questions to the Dr., seemingly almost trying to get him to pinpoint the precise moment that my stone would pass. Kris and Maggie, you guys are both so awesome and I am so happy to have you on my staff!
People who know me know I expect a lot of myself. I always expect myself just to bounce back and keep going. So when the intense pain slowed to a dull roar by Saturday evening, I figured: “Ok, I’ve been through a kind of major ordeal today. I’ll take it easy tomorrow and I’ll be good as new by Monday.”
Well, days later I was still exhausted but couldn’t understand why. I also noticed that I would become bone chillingly cold extremely easily. So I went to “everybody’s best info friend” – Google! And according to our beloved Google, exhaustion is an after affect of kidney stones and can last a few weeks. One site described experiencing kidney stones as similar to having an earthquake go off in your body; which I can certainly relate to. Medically I’m fine, but whether I like it or not it will take time to recover. For me, this is not a welcome requirement. Honestly, I’ve always viewed the notion of “self-care” as kind of a “new age” sissy thing, but I also know that sometimes our bodies have ways of saying: “Slow down kid. Give me a break, or I will break and ya ain’t gonna like it!” So I’m now trying to learn to listen to what my body wants and needs. If it wants a 10 minute catnap, I take one. If it wants longer, so be it. I now have a power wheelchair that reclines, so I can do that. It’s a strange concept for me not to push beyond a few limits. I’m also happy and thankful that I am indeed recovering. I have more energy this week than I did last week. So, onward and upward as they say!
A little while back I saw this post on a friend’s Facebook page and I immediately asked her if I could share her story on this blog. Sadly though a few unexpected occurrences prevented me from posting it until now. But my friend’s story reminded me once again (and it should remind all of us) that no professional, no human being, can say with an absolute conclusion what another person’s fate and future is certain to be, and thank God we are often wrong in our predictions.
“Thirty years ago I gave birth to a very sick little boy, who was given no chance for survival. Today I look at the wonderful man he has become and thank God for the privilege of being his mother. He has defied many odds, achieved beyond all expectations, graduated from university and today starts a new career. I am so proud of you Sam. Happy Birthday mate!!!!
“
There’s all good news from this relatively small, but mighty, group. Their hard work on Robie street (Truro) has been passed to the town engineer and they are meeting next Thursday morning, at 10am, to go over what the group would like to see done.
Mobility Ryders
is doing awesome work for disability advocacy in Truro. Lets give them a huge shout out! Yaaaay!!!!!
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