or, how I got here
I wrote this letter to the folks at the Social Security office who have been busy declining my applications for disability. By posting it here, I hope it might help you understand where I am, or at least where I was last June.
I’m not looking for sympathy – just understanding. Of why I don’t call. Or return an email for days. Or come visit. Or whatever.
3 thoughts on “My Story”
This is an excellent letter and I’m glad to have read it. I couldn’t sleep last night, and had nightmares every few minutes!, so I gave up at 5am, soaked in sweats that had gone on all night. Sigh… I came here to read.
I recall writing on pen and paper, I guess it was in 2000, to the administration. They asked me to describe my worst day and at that time, it was all about depression. I had no idea that other illnesses could cause depression, although, with the life I’d led, and the traumas I experienced, it seemed a natural course and diagnosis.
I had to do the same (write to the disability determination board) with my son. I remember that letter even more clearly, as it was so hard to write his worst day and to allow myself to think the symptoms may not go away, which they didn’t. I cried so much I had to make many copies b/c I kept soaking them as I wrote.
It’s so hard telling people about what disabled means, personally.
I was just telling a new acquaintance that I have a disability and get a small income as a result. He asked if I hired an attorney. Told him no, and that my app was approved within about thirty days. Nearly unheard of, but I hadn’t worked in three years before applying. He said, “They probably approved you because you are nice and they liked you.”
It wasn’t ’til the next day that his remark hit me. I didn’t like it, but decided it didn’t matter one iota what he thinks, because everyone thinks something about it and most have an accusatory attitude.
I’m glad your application was approved! What in the world would we do without those benefits. I mean, truly! Now, when they send those papers for re-examination, I have so many diagnoses and doctors I’ve seen, that they don’t even go through with the investigation.
Being disabled is no fun. Some people think it is. Some people think we have it made! Not having future earning potential and not being able to clean our homes, and all the other things we used to take for granted and think was so easy, which are all now far from our reach, and mostly, not even a whisper of a hope that we could return to the state we were in before we gave up our businesses. (I used to plant butterfly and hummingbird gardens and it was so much fun! Why would anyone want to give that up?) My sister said to me while I was applying, that she wished I wanted more in life. She wished I wanted all that she had (from working).
Well, thanks for the space to share with you.
Thanks again for posting this letter.
I am 71, 72 in April and have FMS, CFS, and am in almost constant pain. My daily migraines improved when my naturopath found I was allergic to wheat but I still get them occasionally. I can hardly tolerate the pain of getting my teeth cleaned so they put a lot of some kind of pain reliever on by gums before cleaning which helps. I have been suffering from extreme pain for most of my life and I can relate with your problems. Everyone of us is so different as to what helps us. What helps me the most is my spiritual reliance upon God and His Son Jesus Christ and the Bible. Without that and my prayer life I wouldn’t have been able to manage the pain. I also have a very supportive husband who has stuck with me for 52 years and helps me in so many ways. I am very thankful for that because I complain a lot. I am sorry for those who suffer so much especially when there isn’t any support from those in the medical field. I too, had to quit working outside my home when the pain became unbearable. It is a struggle each day to be able to do much of anything as far as exercise and it always leads to more severe pain at night. Winter is coming on in north Idaho where we live and the cold winds and snow and low temperature lead to more pain. I do not want to take drugs of any kind anymore because I have taken so many over the years I have developed an ulcer and also I do not like their side-effects on top of all the pain I have. Thank you for your site and I appreciate your honesty. If you want you can e-mail me at firstname.lastname@example.org. I don’t look at my e-mail much so may not answer soon but I’ll be praying for you. Love, Your friend in Idaho, Carol Jacquot
I never saw this before tonight, dear Ash. I didn’t even know about your business, so many things we all have done BEFORE. I call it Before and After, that’s what our lives have become. Yes, I am finally seeing a Naturopath, I am so tired of 5 minute appointments and my internist walking out on me in difficult times. I need to be open to new things and now I am ready. I’ll let you know when I get the stuff which should be tomorrow. I read your letter, albeit an old letter and it still makes me want to weep. I still want you to be able to eat and gain weight. I hope that is happening. Love, Laurie