Tenacity
te·nac·i·ty
təˈnasədē/
noun
noun: tenacity
- the quality or fact of being able to grip something firmly; grip.
"the sheer tenacity of the limpet"
synonyms: persistence, determination, perseverance, doggedness, strength of purpose, tirelessness, indefatigability, resolution, resoluteness, resolve, firmness, patience, purposefulness, staunchness, steadfastness, staying power, endurance, stamina, stubbornness, intransigence, obstinacy, obduracy, pertinacity
"she practices her gymnastics routine with the tenacity of a bulldog"- the quality or fact of being very determined; determination.
"you have to admire the tenacity of these two guys" - the quality or fact of continuing to exist; persistence.
"the tenacity of certain myths within the historical record"
Some days I feel that all I do is eat, drink, and sleep "AWARENESS" and then there are other days that I think that I have not accomplished a single productive thing.
Yesterday was a emotional reminder of all that I have accomplished in the past 9 years.
And today I feel like a emotional wet rag! I can't get into details of the work I was a part of yesterday but, I can tell you how I feel about yesterday. As you all must know by now that when I created 'POMC Island' I did it all alone with no guidance or help. 5 years... five long and lonely years we were the only family that I knew of that had POMC. I was, am just a mom looking for support and information about this horrible rare disease and when I couldn't find any...I created it.
I am proud of all that I've done. I don't want this post to come off pretentious. I want to be as open and honest about all of the ups and downs of living with an orphan rare disease. It has been hellacious. For me THIS is one of the ups. I have been involved with Rhythm for several years now and I hope that many if not all my readers have seen our information and our awareness videos.(www.geneticobesity.com) Yesterday was another session with them. I have seen good things come from them and I hope to see more in the near future. I like to think they have good people and I believe that I am doing the right thing.And that Nate will benefit greatly. The work we did yesterday made me go back to the very beginning and that takes quite a tole mentally.
Our phone conference was originally to be only 1 hour. It was actually 3 and a half hours. It sure didn't feel like it to me, it felt like an eternity! I was transported back in time again and again...reliving memory and heartache dealing with waves of emotions and dealing with my 'tsunamis' all for the sake of 'awareness'.
POMC is complex. Nate is complex.Trying to convey all that we have gone through is complex. Sitting here trying to put feelings into words is...complex.
Today my dear friend Erna (a fellow POMCmomma) and I had a much needed video chat something that would never of happened if it were not for my tenacity. I am so thankful and truly blessed to have as many other POMC-moms in my life now. I am able to laugh and cry with other families that 'get-it' families that KNOW what it is like and feel the way I feel. THAT is why I created POMC Island!
well, let me rephrase that as I don't feel that I actually 'created' POMC Island rather that I was dropped on the island one dark stormy night without so much as a proverbial hatchet with which I could build a shelter with. In a day or so as I think on the past I know I will see the good that has finally come. but right now I still feel the tsunamis that have battered these shores. However it is here, POMC Island is my life and I am now familiar with 'Island life'.
POMC Island is here for me. It is both mentally my enemy and my friend, It has been a hellacious place to be. and yet I am grateful to have found others that have joined my here as well as my 'ocean of friends' and our 'neighboring rare disease islands' that are always lifting me up and encouraging me.
Looking back I can see in my mind how hurt and battered I was in those dark stormy years in the very beginning. I think back at how I longed to have a connection with others how gut wrenching and devastating it was to be told that there were no others here in the US and I yes, guess I was tenacious, for me there was no other way to go but onward... and no, that won't be changing anytime soon. I want to do more, I feel there is still way too much more to be accomplished than I have actually done. I want to reach others so that they never have to feel the horrible aloneness that being dropped on a deserted island feels like.
PLEASE ...please share our story. There may be someone out there that is crying, lost and alone in the dark that doesn't need to be because I AM HERE. WE ARE HERE.
www.facebook.com/POMCmomma
www.facebook.com/P.O.M.C.Island
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