It is ADHD awareness week. As some of you may already know, my lovely wife went along with my scheme to get her on a local TV show to talk about ADHD. Don't get me wrong, she is not afraid to talk, she is just embarrassed about how she looks and she feels frumpy, however she did it and did not complain. Like so many things in our lives, she does them and DOES NOT COMPLAIN. People ask her how she is doing and she usually says, "I'm fine" but little do they know, she is a master liar. Well at least where HER health is concerned.
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She arrived a little early at the station on Monday because she had just finished attending a school intervention meeting with a friend that was in over her head trying to get accommodations and a diagnosis for her son. For those of you that saw the video clip that we posted the other day, you probably saw a housewife and a mom, advocating for those that have a difficulty speaking for themselves. She does it every day, all day for us and for anyone within her reach.
What you didn't see is the cane that is her constant companion and with her everywhere she goes... she happened to leave it in my office during the show (which I didn't realize until afterwards). She did it because she doesn't like explaining to people why someone so young needs a cane and she doesn't want people to know that she is in pain all day every day.
Lisa has an auto immune disease called "Ankylosing Spondylitis" (say that three times fast)... we just refer to it as A.S. For many years the only thing that helped with the pain was a nasty little drug called Prednisone which does combat the chronic unbearable pain, but it has some very unpleasant side effects. Major weight gain and Moon-Face are some of the more obvious side effects and sadly not as severe as some of the others that are associated with Prednisone. Back when we were first married, the alternative was to lie still in a completely blackened room secretly wishing to die… sadly she started taking it years before she met me, I believe in her early teens. Thankfully, the Prednisone that has made the only difference in her pain for the last thirty years is now at a very low dose and is taken mostly when her NEW infusion medication is wearing off (usually at the end of the third week in her four week cycle).
So in the interview, what you couldn’t see is how she struggles every day. How the muscle relaxants and pain killers that they prescribe to help her manage the golf ball sized knots and muscle spasms do little to help. You can’t see how difficult it is for her to get in and out of our 15 passenger van because in addition to A.S. she (and several of our kids) have another lovely disorder called "ehlers-danlos syndrome (E.D.S)" so if the chronic pain, spasms and knots weren’t enough, she gets a whole new batch from the E.D.S. E.D.S. is a connective tissue disorder that basically makes her elastic woman, but not in a good way. Her joints are so loose that you can pull her kneecaps around the side of her leg. So stairs and steps, uneven ground... heck even flat surfaces are all accidents just waiting to happen. So the disease is turning her immune system against her and literally attacking her muscles while the disorder produces far too much collagen in her skin and connective tissue so any support she might have with her joints is weak and minimal at best. I guess she should be grateful that she is even upright at all.
She has determined that she will post something every day this week. Today's post was going to be a picture with a funny blurb or something inspirational, but I am afraid that just won’t do! The reason it was going to be a picture with just a blurb is due to the fact that today, she will spend several hours hooked up to an I.V. getting an infusion. To date, this medication has been the only thing that seems to really help slow down her disease... not cure it or stop it, but just slow it down. After her infusion, she will be driven home by our daughter and hopefully, if the cards are aligned and no major school trauma comes home on the 4 o'clock bus, she will get several hours of restful mostly pain-free sleep. If all goes well that blissful sleep might stay with her for a few nights, which will end up being the only decent sleep she has all month until her next treatment.
Why am I sharing all of this? I am fairly certain that she will want to kill me when she discovers what I did. That's okay, I am ADHD, I don't really care about the consequences right now, sure I may later, but I am fairly certain I can outrun her. The truth is she doesn't want people to know, she doesn't want pity or anyone treating her differently because of it. In some degree, I think her trials are partially why she understands US so well. On some levels she has empathy in regards to not being able to function the way the average person does. She may not get us entirely, but she understands enough to communicate with those of us that are lost in a world full of possibilities and distractions, absurdities and epiphanies all wrapped up snugly in a bundle of co-occurring conditions.
When we were engaged, many of her friends half-jokingly told me that I was marrying a medical bill. Too true, our co-pays for her medications and all of the many medications that the rest of us take literally make-up at least 1/4 if not more of my monthly salary... and that's with health insurance. If I knew then, what I know now, I would still choose to marry my little 5' fireball. She has saved me in every way that one person could save another (my Titanic quote for the day). She has rescued me from myself and the down sides of my disorders, she has encouraged me to soar and given me the strength to do so, but has helped me stay tethered enough to not float off into the ether. She is my light in dark places and she is the most incredible person in my life. Without her and her influence in my life I would most assuredly be dead or at the very least a broken person. Although our life has been far from easy, it has been a life of worth, one of value and one that I am not ashamed of. There are not words to describe how I feel about my soul mate, my wife and my queen, but I will spend the rest of our time together trying to find those words and saying them often enough for her to never forget.
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I have asked each of my kids to take moment to share a thought about their mother and what she does for them. So when the Queen is getting her medical care today, we will do our best to hold up the Castle until she returns. Long live the Queen... (This is my greatest secret wish!)
Humbly,
The Distracted King
Rachel – Age 20
(ADHD, Inattentive, Dyslexic - allergic to painkillers and stimulants)
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Mariah (Mia) – Age 18
(ADHD, Sensory Processing Disorder, ODD)
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Mia’s follow up email #1
Daddy,
I am lying in my bed sobbing because I wrote my paragraph and my stupid iPod keeps malfunctioning and won't send the email. It keeps telling me I have the wrong password when I don't, and its making me sob I hate it! :( :(
I am so mad, my paragraph was perfect. I smashed my iPod against my bed and I'm still sobbing I'm so mad. I can't even think. F u Steve Jobs you f-ing bastard you suck and I hope you're miserable!!!!!! :'(
I guess I'm just gonna have to start over and idk why this is making me cry but I'm really upset. It’s been doing this since I installed the f-ing new iOS and iHate it. I need to write it later I'm so mad and sobbing I can't do it.
Mia’s follow up email #2
By the grace of heaven it looks like it sent! Let me know if it did. Sorry about flipping out, now my eyes hurt for no reason.
Love you,
Mia
P.S. I still hate you Steve Jobs
Fernando (Fernie) – Age 18
(he has lived with us for 3 years now, we have no insurance for him so he is currently un-medicated)
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Hannah – Age 17
(the only one without ADHD)
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Love you Mum,
Hannah aka The Voice of Reason
Mary (Maggie) – Age 15
(ADHD, Dyslexic, Dyspraxic, Dysgraphic, etc.)
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Hunter – Age 14
(ADHD, OCD)
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(ADHD)
(The intro to his email is in Korean and Russian… I didn’t bother trying to translate it, but he sent an attachment in English for his mom… double spaced [which I removed] with no punctuation)
my mom is made of angel tears she is the most amazing person in the entire world she has always been nice to me even if she has been hurting extremely bad she also buys everything we like and she cooks the food we want and she makes the most amazing pies in the world she also bakes extremely good and lastly mum I love you so much I just want you to know that