Friday, April 13, 2012

The Day I Forgot How To Spell My Father's Name

When I was at my worst, sick and miserable, floating around in pain, anguish and a severe fog of confusion, something happened that damaged my faith in myself. I was having serious cognitive problems, and not just the "You are getting older" kind. Frankly I was 29 so in retrospect was not old at all. But I frequently didn't remember what I was doing while I was doing it or where I was going while I was going there. I would be driving down the street from my house and suddenly have no clue where I was, and poor Yorkie was left on the wrong side of the front door more than a few times. Well one night I got into an argument with my husband over how to spell my father's name. Honey pie was laughing but I was getting mad, insisting it had two L's while he said it had just one. I finally gave in and called my dad who informed me in a bit of a surprised voice it did have only one L indeed. Damnit, my husband was right!

I hung up ashamed, speechless, hanging my head. My husband could see how upset I was. For who in the world forgets how to spell their father's name? Maybe if he was just a sperm-donor daddy that was never around, but the man that raised me? That was a dark low in my CFS/Fibromyalgia journey and I am glad to say with the occasional exception of forgetting why I walked into a room (okay maybe more than occasional) or losing my train of thought (usually off on a tangent anyway) I am relatively clear headed. There are so many basic things this disease robs a person of. So many fundamentals of life that are taken for granted until we just can't do them anymore. Chop an onion? Sleep? Work? Do the dishes? Drive yourself to a doctor appointment? Pick up your child? Oh the list goes on. And to top it all off the world at large, fueled by sweeping numbers of the medical community, doubt us. Tells us it's all in our heads, treats us like a junkie or mental case or lazy free-loader. 

Well I have had it! Meeting large numbers of Fibro patients through this blog shows me these are not problems unique to the individual. A great many patients are all singing the same song, just to a different tune. Details vary; geography, additional ailments, race, religion, marital status, socio-economic levels. Oh Fibromyalgia does not discriminate, she is an equal opportunity invader. But many patients are afraid to speak out, can't take judgment from the world at large. I was one of them before the strokes shocked me into action. Made me not care anymore about what anyone thinks of me, my drama, struggles or journey. We need real help. We need a charge, a General to lead us to war, the war of informing the world we are real people who are really suffering. There are enough of us out there helplessly watching our lives crumble apart, completely vulnerable and unable to do anything about it because we are so sick. This is pure insanity and something has got to change. We have to band together and do something about this. It really is just enough already. 

So hang tough with me friends. We are not going to sit back and wait for justification from a reluctant medical community. We are not going to let big-pharma be our only voice as they heavily advertise the miracle of their "drugs" that only mask symptoms and many of us cannot afford anyway because they are too darn expensive. We are not going to keep losing our homes and families and security and health care and quality of life to this nameless, faceless stranger that won't kill you but leaves you rotting like a living corpse, wishing you could just die and get it over with. Each and every one of you I have come into contact with have sparked tiny little embers in me, and now the brush is smouldering, the twigs are starting to burn and pretty soon the bonfire will be raging. When this lioness gets pissed heads roll...and I am really pissed off.

Thanks for joining,

This blog was originally published on 9/4/2010. Prednisone is know to induce bravery, or what some would call delusional rantings, among other things. But that anger kicked me into gear and this is why we are standing stronger than ever today.


  1. Thank you for writing about the problems of this disease. I have gone from an intelligent, articulate college graduate who typed 100+ wpm accurately to a forgetful airhead who doesn't know what day it is and takes forever to type or speak a sentence. No one understands what this is like until they experience it themselves.

  2. Oooohhhh yes. I think you knew I needed this little sermon! You know what irritates me? I'lll be trying to explain this cognitive stuff to people and the say, "oh, I do that all the time". No, no, you don't. I was a legal professional before this hit me! Now I can barely address an envelope. I still have my good days (I wrote a brief this week that was rather good, if I do say so myself) but that's rare and the brief that should have taken 2 hours took 2 days. And the medications make it worse. (try turning around fast while taking lyrica.mits actually quite comical if there are no hard edges close by) Geez, I feel a blog post of my own comIn on :). Thanks for sharing Leah. :)

  3. Self-Taught, I got fired for exactly those reasons. And now I couldn't even work the 3 days a week I was working then anyway, so it doesn't even matter. But it kills me that they were able to get away with firing me because I couldn't work 4 days instead of 3, and because I lost so much cognitive function.

    Leah, let's go! Tell us what to are our fearless leader!

  4. For years I did not lose cognitive function. It is now BAD!!! One doc. thinks I have dementia. Maybe I do, but the pain doc. says its the many years of pain. I loved the pep talk!!!!

  5. Joy: I feel your pain when attempting to explain cognitive issues - ppl are so quick to say 'oh i get that all the time'. Yes but it doesnt take you ten attempts to lock the door coz you cant remember you locked it or you go into town on the bus and forget what your going into town for. Only for it to be something really important. THEW rant over :/

  6. A year ago I was in the car with a friend and I called my husband and left a voicemail saying "Hi this is Peanut, call me back". My friend in the car stared at me like I was crazy. She said PEANUT? I said what?? She said you just called yourself Peanut. I said "I did?" My name starts with a P but I have NEVER been referred to as Peanut...EVER. I don't know how that word came out of my mouth! All I can do is laugh....cause crying wears me out.

  7. My friend asked me tonight what my bucket list was. I told him to raise my kids and die peacefully. I'm only 37, but Fibro has taken away every hope, every dream I've ever had. All I can hope for now, is that I make it thru the day, eventually getting my children adjusted, and again, die already. You speak the truth Leah. They dont care about us, they don't understand, not just the dr's but family, friends, etc. I just quit tryin to explain and look differently at death than others. I dont see it as this horrible thing anymore, death is a gift really. I know one day, I wont hurt anymore.