Two and a half years since my ALS diagnosis. Of course, if you follow my blog or know me, you already know I'm in a power wheelchair and am a quadriplegic. I'm still able to eat though I must be fed. Drinking is getting very difficult and I get most of my liquids through a PEG tube. I'm breathing on my own though I wear a bipap at night. My voice is profoundly effected by muscle loss causing dysphagia. I probably feel that loss the most. To lose the ability to express oneself is truly awful.
I lost the ability to type normally, to lift large files from a file cabinet, to pinch a binder clip, and to engage in my most favorite past times, motorcycle riding and knitting when I lost muscles in my right hand, mainly my fingers. I lost self-confidence when I was dismissed from my job for filing a worker's compensation claim. In the earliest onset of my disease, I had significant nerve pain as well as sporadic diminishing range of motion.
When my opposing hand and arm started exhibiting symptoms, I lost the ability to drive a car. By the time I got my diagnosis, I realized I lost the ability to work for a paycheck.Soon, much too soon, I lost the ability to motate normally. I went from cane, to walker, to wheelchair inside of a year.
When my husband abandoned me due to these overwhelming circumstances, I lost my freedom. I was held against my will, deprived of my rights, forced to eat substandard food, and subjected to poor care and vengeful, self-serving careworkers. .
Losing the ability to make love to my husband was a very real loss but losing the ability to hug and kiss is worse. Being able to clearly say "I love you!" in my own voice with my unique tone and inflection, Is an excruciating loss.
On the whole, I'm doing okay. Thankfully, I got sick enough, without dying, to go to the hospital. Then I (and my husband) were deemed poor enough by the government to put me on MedicAid. After losing our financial security, real estate, our hopes and dreams, I was finally blessed with one break, I qualified for a wonderful hospice facility. I suspect that my husband (who is back in my life) won't fare as well. Damn shame. You work your whole life...
I lost the ability to type normally, to lift large files from a file cabinet, to pinch a binder clip, and to engage in my most favorite past times, motorcycle riding and knitting when I lost muscles in my right hand, mainly my fingers. I lost self-confidence when I was dismissed from my job for filing a worker's compensation claim. In the earliest onset of my disease, I had significant nerve pain as well as sporadic diminishing range of motion.
When my opposing hand and arm started exhibiting symptoms, I lost the ability to drive a car. By the time I got my diagnosis, I realized I lost the ability to work for a paycheck.Soon, much too soon, I lost the ability to motate normally. I went from cane, to walker, to wheelchair inside of a year.
When my husband abandoned me due to these overwhelming circumstances, I lost my freedom. I was held against my will, deprived of my rights, forced to eat substandard food, and subjected to poor care and vengeful, self-serving careworkers. .
Losing the ability to make love to my husband was a very real loss but losing the ability to hug and kiss is worse. Being able to clearly say "I love you!" in my own voice with my unique tone and inflection, Is an excruciating loss.
On the whole, I'm doing okay. Thankfully, I got sick enough, without dying, to go to the hospital. Then I (and my husband) were deemed poor enough by the government to put me on MedicAid. After losing our financial security, real estate, our hopes and dreams, I was finally blessed with one break, I qualified for a wonderful hospice facility. I suspect that my husband (who is back in my life) won't fare as well. Damn shame. You work your whole life...
I just typed a huge comment and it got erased accidentally. Sigh. I couldn't find an email to send this to so I will just comment on your blog.
ReplyDeleteTina- I think you're a fabulous human being and an incredible woman living through an extremely hard and horrifying situation. All the feelings you have about the current state of things are valid. From what I have read in past posts, I am really happy that you found Bailey Boushay- where it sounds like you are much happier and feeling supported. You deserve it.
One tool which helps me when I am in hard times is listening to some Buddhist philosophy. It's so practical and always advocating love, which cannot be advocated enough, in my opinion. Love should always win. I hope you find these as useful as I do: http://www.audiodharma.org/
I feel very fortunate to have met you and look forward to seeing you every week. I'm always here for you if you want to talk.
Be well,
Lindsey Rae
I'm tickled that you found me, read some posts, and commented. So few leave comments. I will look up that site and I totally enjoyed your website and photography! I'm the lucky one. Thanks for the visits.
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