7-04-2010 "The Paul Harvey,......The REST of the story",.... Continued

While I was in the hospital, I was hooked up to an IV of steroids, which in turn caused me to gain weight,...a lot of weight,...uhhh,..can you say,... FAT. Which is probably why I exercise so much. Over compensation, and just basically wanting to get back to my fighting/survivor weight class.

My speech and ability to communicate was adversly effected. I knew what I wanted to say, but I couldn't find the words. I also had a loss of some "long term memory" and some "short term memory". I actually have no controll over what I can or cannot remember, as it comes and goes on a daily/weekly/monthly basis. I personally think this was directly related to my loss of communication and loss of speech. While I was in home confinement, I had one appointment with a speech therapist, She was very patient and tried to be helpful, but she soon realized that I was so bored with the exercises she asked me why I even bothered to come. I explained that it was on my Dr's orders, and that yes I was bored and that I could sense that my ability to speak, and mental access to my vocabulary was slowly returning. She agreed. Although, even up to todays date, there are words and forms of communication that I cannot remember or recall.

Now,...due to my speech loss and loss of LT and ST memory, I was set up with a "Functional MRI". This was to decide how close my AVM was to my cerebral/brain speech center. The results came back positive/negative, (pending on one's perspective) and the AVM was at least 1.75 to 2.0 inches away from my speech center, which is ok for corrective surgery, should I choose that route.

Well,....home confinement has ended and I am ready to go back to work. Under FMLA, in order to take advantage of that provision, I had to previously use all of my accrued vacation time and accrued sick time. meaning I had none left. Anyway,....with a Dr's release in hand I returned to work. My fellow workers were quite sympathetic and understanding. Yes,...there was a drastic learning curve for me to work with, as many things I could easily remember, but on the other hand there were things that I couldn't remember or recall. I felt helpless and inadequate. But my managers and supervisors understood my condition and worked with me as they have continued to do so, even now.

I really felt that my AVM was completely under controll,.....untill I had a Grand Mal Seizure at work in June of 2009, I remember starting my lunch break, and then,....suddenly,...I couldn't speak. The next thing I recall I was laying on the floor, looking up at people, as a close work friend was kneeling down beside me explaining that I had a seizure. Three co-workers came to my aid as I was in the midst of my first ever seizure. An ambulance was called and I went back to the Methodist Hospital South. On the way I again became "combative" and was "knocked out" (ie) morphine injection. I woke to see that my brother was there by my side and my Lady Nellie was comming into the room. The Dr. came into the room and explained what had happened to me. I was prescribed "levetiracetam" (a keppra substitute) 500mg to be taken twice daily. My second seizure occured in May of 2010, simply because I was feeling good and felt that I didn't need the medication,...boy oh boy was I WRONG. It happened at home while I was at my computer desktop. I had the loss of speech and I blacked out. I awoke to a very nauseous feeling and immediately threw up. I contacted my nurse practitioner and was told to,.. NOT,... stop taking my medication. (see what you can get by attempting self medicating ones self?)

Ok ya'll,.....here is the very hardest part for me to explain,....so please bear with me.

Mrs. Nellie J.L. Tubbs was my life partner, we shared our household chores together, we bought our home together, we bought the furniture together, we shared in the landscaping and planting of the front yard. We called each other every morning (on our way to our work place) to check on each other. We went on our vacations together. We sat beside each other while we were working on our respective computers. We shared everything. Nellie was the one true love of my life and my soul mate. She lived in my pocket as I lived in hers.

Nellie enjoyed sports cars as I did. She wanted to get a new car and decided upon a 2008 Saturn Sky Red Line Turbo charged 260 HP. Nellie special ordered the car, and we went to pick it up together. Nellie became involved with a Pontiac Solstice/Saturn Sky club online. Nellie also wanted to participate in the club meets at different parts of the country, I of course gave my permission to do so, as Nellie had done and sacrificed so very much for me with my AVM condition. Nellie had a Solstice/Sky group gathering in Myrtle Beach SC in May of 2009, we talked (via cellphone) every morning and every evening. She had a wonderful time. Her next Solstice/Sky rally was held in August of 2009 at "The Tail Of The Dragon" on the Tennessee/North Carolina Border. I held her tightly and gave her a deep kiss on wednesday August 5th 2009, and told her to BE SAFE, as I would expect to see her that following Sunday evening August 9th. We again talked every morning and every evening. She again was having the time of her life. ( note: I couldn't participate with her at this rally because I had no vacation and or sick time accrued). I was so very much anticipating Nellie to return with tails of excitement and adventure. Then,....there was a knock at my door on sunday morning, August 9th 2009. A local police officer came to tell me that Nellie lost her life in an auto accident late saturday night while riding as a passenger on the Tail of The Dragon. The driver lost controll on a left hand turn. The sports car spun out of controll and impacted a tree on the passengers side killing Nellie instantly. Nellie's family and I didn't get along as they considered me to be a negative influence on her life. (another story for another time) Nellie's family claimed the body, and was brought back to Alabama for the cremation and memorial services. I was asked not to participate in the memorial services as I was not welcomed. The last time I saw my Lady Nellie was on Wednesday August 5th 2009, and I never saw her again. I miss her so very much.

So,...I had an AVM in 2008,....I lost the love of my life in 2009,....and I am still here.

I am a,....SURVIVOR,....always have been,....always will be.

Another personal quote from a previous AVM Survivors post

"Speaking for myself,...I am very happy to be here. I have met wonderful courageous people, amazed myself at the strength and resolve of the members here, and have made many friends.

Everyone is different and everyone has different perspectives on life in general. Again, speaking for myself, I see the glass as half full. I always see options, choices, alternatives, improvisations, and modifications. I will refuse to let this malady (AVM) steer, direct, and controll my life. I choose to acknowledge that my AVM, was and is out of my controll. It is not my fault. It is a condition that I can and will deal with. That is my choice.

As "Captain Jack Sparrow" once said,..."Life is about choices",....and with that quote I whole heartedly agree....lol"

____________________________________________________________________________________________

I have had trauma, tragety, and losses through out my life to date.

I live by creeds, motto's and quotes, to inspire me.

"Today is a good day to be alive"

"Life is about choices"

"You are,...What you do,...When it counts"

"Never Give Up"

"Don't Quit"

"RHKA"

The above are some I refer to quite often.

I close this blog entry with the following statement.

Our AVM's are NOT OUR FAULT. The AVM's are a condition we must deal with in our own ways. We all have choices. We all have options. We all,.... are AVM survivors.


Hi, again, I finish reading your post about Nellie remember she is still with you in your heart always, U take care of yourself like she would have wanted u to. God Bless

Wow what can I say. I’ve just read your post about Nellie, the love you have for her really shines through in your writing. Stay strong buddy.

You have been through a horrible ordeal and there is nothing that can change that, for which I send to you my deepest sympathies. I am sorry that Nellie’s relatives did not respect your relationship with her or allow you to properly grieve. You should consider that having so many life traumas together will give you symptoms of post-traumatic stress (PTS) syndrom. I hope you are able to recover from this. And I too was on seizure medication after my 1st grand mal, and after about a year I just stopped taking the meds. I then had a second grand mal. I was then told that just stopping my meds can cause a medication withdrawal seizure. To go off meds (or change to a different one) you have to taper off the meds under doctor supervision until you are completely off (and usually you need to have an EEG done) or before beginning a new medication. I understand it is really common for those of us with seizures to do this (stop taking pills & having rebound seizures). Hang in there!

William, I KNOW how hard this was writing this down. It took a long time for you to tell us this story and I am proud of you for expressing yourself in this way. Telling someone is not quite the same as writing in down and having to think about every word and telling your story to us. Thank you for sharing this with us and letting go of a little bit more of yourself. You are a wonderfully supportive person to the people here and have been a good on line friend to me! If I were to see you in person I would give you a big ole hug. Your friend, Kellie

Wow, that was heartbreaking to read. My sincere condolences…I think you could add this to your list of quotes because you certainly have alot of courage, my favourite…

"I gain strength and confidence by every experience in which I must stop and look fear in the face….I say to myself, I’ve lived through this, and can take the next thing that comes along…We must do things we think we cannot do."
Eleanor Roosevelt

Thinking of you.

William, I just finished reading your blog posts - all of them. I am really sorry for all your suffering and I appreciate even more the support you have offered to myself and others. Remember we’re here for you, too. Thanks so much for sharing your story, and stay strong.

William, I am so glad you felt ready to share your story because: (1) the mere fact that you ‘let it out’ (instead of keeping it pent up inside you) is ‘therapeutic’ for you in itself and (2) you DESERVE all of our compassion, etc., as you have been such an inspiration and compassionate person to numerous people here! I know that telling your story is not easy and I am soooooooo PROUD of you for doing so!
As far as the issue of Nellie = WOW… your love is so evident, powerful, and great! I’m in awe of the love you two shared! NO ONE can ever take away the memories you have that you two created… those memories are your’s, her’s, and whomever else you two allowed the priviledge to ‘view / participate’ during your time together. Her family banning you from her funeral was ABSOLUTELY WRONG! Their malicous actions WILL ‘bite them in the butt’ (most times it doesn’t come as quick as we would like but it will come); however, let your wonderful memories of Nellie provide you comfort and loving warmth. As a firm believer that ‘things happen for a reason’ and often hearing of people not wanting their loved ones to see them ‘not as their usual selves’, perhaps remembering Nellie the way she was in the loving, happy memories you hold dear to your heart is the way you are suppose to remember her.

I always depised that saying ‘It’s better to have loved and lost, than to never have loved at all’… until i ‘got’ it. As humans, we dislike ‘change’ and always want the ‘good’ to remain & continue. Your pain is from wanting more of that ‘good’. Her coming into your life was a ‘gift’ (the love, the ‘goodness’, etc.) and it will remain as long as you allow it to. Instead of the memories being painful (because they remind you of your loss); allow yourself to feel the pleasure, happiness, etc. that you felt during those times you two shared and then the memories will not hurt as much. Those memories will then become like a favorite blanket (= wrapping you in warmth & comfort). Find the ‘good’ in the situation (that you had the honor / priviledge / blessing to experience such a wonderful thing) and it will help ease the pain.

Oh William, I am so sorry to read about the loss of your lovely Nellie. She sounds as if she was an amazing person.