IntrinsicTina

It's the Thanksgiving holiday weekend. I'm alone even though I reside in a shared bedroom with a 78-year old woman. I'm alone in this skilled nursing facility housing 100+ souls. I'm reconciled to my aloneness. My heart doesn't hurt. At least not today. I hold hope in my heart that my husband will visit. He begged off taking me to church this morning citing snow yet the roads are clear. But I hold hope nonetheless. I have God. I know I do. He never leaves me and carries me every day, every minute. Especially when I'm weak and in despair.

First of all, I would like to thank my friends and extended family at Life Care Center of Federal Way for joining me and making it possible for me to participate in the Ice Bucket Challenge. Without their gracious and capable care, I can do nothing. I would like to thank the millions of people who have taken the time to participate in this event, have learned about ALS, and who have reached into their wallets to support ALS research. I would also like to thank the ALS Association, particularly the Evergreen Chapter, who have given so much to many of us afflicted with ALS. Last, I want to thank the tens of thousands of us PALS (persons with ALS) who pull up their bootstraps every day and support each other and are literally, dying for a cure. I sincerely thank all of you for your love, well wishes, and support. God bless you. The preceeding was the speech I made prior to taking the Ice Bucket Challenge this past summer. I still feel that way today. This is my first Thanksgiv...

My loss of energy is a big problem all of a sudden. I am exhausted so easily. Just trying to get through a blog entry is a test of my endurance. I have many entries started then abandoned due to interuptive naps, taking medications, cough assist breaks, or those pesky meal times. I also suffer technical difficulties, such as when I write out a paragraph then "eye gaze" cancel instead of insert text.

Yesterday, November 19, 2014, was another day I would as soon forget, but I dare not. It started normal enough with fairly competent aides. I had breakfast in the diningroom and retreated to the relative privacy of my shared room to rest up for my big quarterly appointment at the ALS clinic. I made it known that my appointment was this day and confirmed my transportation pick up with the nurse. I learned that my pick up time once again inadequate should we encounter traffic or other delay. I asked that the pick up be moved up to 11:00 or 11:30. She came back and let me know that it was moved up to 11:30. My room mate also had an appointment as well but her noon pick up was noon and she was prepared accordingly. On the other hand, my pleas to hurry went unheeded. At 11:25 they finally changed my soaking brief unhurriedly, my sack lunch was delivered. Finally my brief was changed (single-handedly), then I was transferred by both aides. Incredibly, the aide most familiar with me went to...

In the state of Washington it is legal to end your life if you have a terminal illness and if you are able to self administer. You tell your doctor, who refers you to a panel of professionals who ask you a bunch of questions. In a few weeks you go back and do it again. If you pass the hurdles, you get the appropriate prescriptions to have filled. The prescriptions are for anti-emetics and phenobarbitol. Yes, I've asked a few questions of my own. I've been considering taking this route as of late. My progress is ramping up. I'm essentially a quadrapalegic but have full mental faculties and I'm being cared for by people who don't really know me or care about me. Additionally, my husband is here less and less. While I need him more and more. My family visits infrequently. I spend an inordinate amount of time alone and I'm coherent enough to know it. I see the road ahead. I live here. I may as well be dead sooner than later.

"What if the hokey pokey really is what it's all about?" Scary thought. If that's the case, I didn't hokey pokey nearly enough. Family. Family is what it's all about. And, once again, I didn't make family a big enough priority. Pregnancies were not celebrated events. They were looked upon as lost freedom and a slew of missed opportunities. Now, where did we get those ideas? I was steeped in that philosophy as my mother bemoaned the misery of her life. She never hesitated to tell us, her progeny, that we were the reason she struggled in life. That she would have traveled had we not been born. Is it any wonder that I cried in horror when I became pregnant? My husband wanted to delay having a family, so I was certain he was going to leave me as soon as he found out. I wish I knew then, what I know now. My daughter is my greatest achievement, my best investment, my pride, and my joy. My life has been blessed in so many ways. I couldn't even fathom it at ...

And so it goes...The holiday season is upon us. With it comes the inevitable pull to go home. Christmas carols like "I'll be home for Christmas " just fuel the fire that burns for home. I want to decorate my home inside and out. Every advertisement reaches into our hearts and magnifies our lonliness. What are we to do?