It has been 3 weeks since we transitioned home and what an eventful time it has been. The first few days were extremely challenging with very little continuous moments of sleep for either of us. TOUGH STUFF. Then we began to settle in, find our footing so to speak. Todd is making wonderful (if not mind blowing) progress each and every day. This is a completely new reality for us and those who have worked with him. These things in the past have been measure in weeks and months, not days and hours. The shunt revision surgical procedure has completely altered our equation. It is immeasurable. The range exists from the most subtle to the more obvious.
We are no longer the victims of an accident but the major participants in an amazing survival story. It has been this way for a while. Our commitment to one another is unwavering while, daily, we explore new equations and answers. When an obstacle is encountered, we put our head’s together to find a way around it or a new path all together (important to note: there are times where one of us needs to do this on his/her own, often that is Todd). We both smile when we have figured it out, quite pleased with ourselves! Shamelessly kissing our way through it all. This is a time of great accomplishments in small but HUGE packages.
As in true Todd style he takes the most challenging path first and if that proves too difficult he takes it down a notch to find an easier pathway. It is this drive and determination and way of getting from here to there that is going to make this next phase both beautiful and challenging. To all that have worked with us to get us where we are (friends and family), we offer our deepest gratitude and life long friendship. The therapy mat is amazing and Todd is already showing us he can do things we never knew he could. Nothing like giving the man a bit of freedom to see the spirit shine. We seemed to have most of what we need and are reaching for the things we don’t. We revisited our dreams and are laying out new goals. A very important piece of the puzzle for recovery and our road in general.
Since we have been home Todd is eating his meals with the gusto of a growing teenager! Each meal is a delight that requires intense concentration, nary a question or comment will be responded to. (There was a morning when he had a plate of cantaloupe to start while I was making some toast. As I turned around back to him I found him systematically placing each slice on my plate! Guess he still doesn’t like cantaloupe) He has moved from being pushed around in a wheelchair to being (for the most part) self-ambulatory. While homelife and therapy combined is a challenge for us both we are slowly making the adjustments and savoring each day with its comical, challenging, and delightful moments/ accomplishments. There are other issues that we have been trying to resolve since we got home like getting Todd a proper wheelchair so he can more easily propel himself around the house! All held up due to an absurd contractual dispute void of any humanity or ethics. The stories I could tell you… Just as always we have our daily battles that have nothing to do with the ones directly resulting from the accident in 07.
The most beautiful and wondrous moment was on the 8th day of the eighth month .08.08.08. On the evening of this day Todd found his voice. This changes everything for us both. While I have always been able to interpret most of the incoming but infrequent whispers, now Todd and I are operating as a team more than ever. We are able to weigh things out and make decisions that are best for him or us both….. and well now his opinions are even clearer than in the past. They can be HeaRD! It has been comical at times. Without a doubt something we are celebrating around here. Being home is a 24 hours round the clock job for us both……
In my attempt to bring you and Todd closer and experience the changes that have occurred I tried an interview with Todd (for blog communication). Here is the result. This was easier, for Todd, than to come up with something to write to you all. I typed as he spoke ……the answers are all him verbatim (minus a couple of “how should I put this”). I was surprised at some of his answers……enjoy. This is one amazing brain we are working with. As I have always had faith in Todd’s healing I am convinced more than ever!!!!!!!!! So shall you I expect. Sometimes the words don’t fit just right this a natural part of the reconnection, but all that I hear from Todd’s lips is pure poetry…..so amazingly and intelligently expressive. I am not exaggerating here a bit. Seriously. See for yourself.
My interview with Todd:
How is it being home?
“Educational. I would think that it would be just wonderful but then umm… there is much to learn about being home….. much to adjust in my lifestyle.”
For example?
“Umm. I have to take things a little more seriously by way of doing things related to the way in which I am being paid. In other words I have to take things seriously and not poke fun at it.”
Are you finding some of the every day tasks in homelife a challenge?
“Yeah.”
What are some of your goals for the next few weeks and months?
“Become more of a advocate for change. That one is several. It will involve becoming more at ease with changes to my position and uh….independence.” (more later on this one, he got tired nap ensued)
What are some of the things your are looking forward to now that you are out of the hospital?
“Actively participating in an event. Imagine an event that is similar to the events I have been involved. (Arts and technology)”
What did you think of the wall of gears when you saw it?
“I loved it. I am having a hard time seeing it the way you intended it to be. Other people didn’t and so it really borrowed from the intention of the pieces rather than the reality of the piece for me.”
What is your favorite part of being home?
“Looking at new work.”
How does finding your voice change things for you?
“Makes me seem more serious. I was always under the impression that I was considered unique but unimportant but I am important it turns out…. And people think so as well.”
It is true. Is speaking hard work for you?
“Yeah. Because I think it needs to be perfect and so its difficult to make it perfect. “
Is it a challenge to find the words you are looking for?
“Yeah.”
How is your physical therapy going?
“Not so good.” Why? “Not into it as much as I was.” Why? “Cause the result of doing it is taking up an immense amount of time.”
That said. How do you feel about graduating to walking around the house?
“Feel like I am ready to be there.” You need physical therapy to get there? “Yeah and psychological therapy as well.”
How is it having visitors?
“It makes everything seem more realistic. So therefore the words I come up with have bigger impact.”
Does it tire you out?
“It does tire me out but…. It is fascinating and leads to more important questions.”
To my friends (and major supporters) as they read this I would like to say
“Thank you.”
Note: This interview took quite a bit of time and then Todd was out like a light. Know that this much information does not come easy at this point in time, but we were eager to find a way to share with you all.
Thank you for your faith and believing in us both.
Alexandra & Todd
p.s. keep your eyes out for some new special photos.
p.s.s. Todd is getting a kick out of reading the blog responses so bring it on, don’t be shy. This is the first time we have been so connected with it all. So write to us, we read em all together. (if you feel private write our email account mizalex@yahoo.com)
August 18, 2008 at 3:35 pm
whoehoeoe!!
And i did run into Marsha (and Jochem) this weekend at a popfestival in NL, and told her you found your voice Todd, didnt know yet you give interviews allready! Way to go!
What work, what work!! Love love love!
xx Toetsie
August 19, 2008 at 6:24 am
Yes, I think mind-blowing is appropriate! It is remarkable to see our guy in action. His determination — punctuated with huge grins — lifts me up, spins me around and sets me back down hard.
I know you hear this from Alex all day, Todd, but you are amazing. I look forward to seeing what “new work” you tackle next.
xox
Penny J
August 19, 2008 at 7:22 am
Amazing, you both are an inspiration! It is so good to see all the hard work and determination you (which you both have in spades!) pay off. I can’t wait to see you both.
Kristi
August 19, 2008 at 9:27 am
WOW !!!! this is truely amazing how far Todd has come. It is wonderful to hear that you both are home and progress is moving along, brought tears to my eyes to read the interview that you had with Todd, trult amazing ..I guess that physcial therapy is really working. Keep up the hard work Todd. Thanks for sharing the continued progress in this new chapter in your life since the accident.
a caring reader in Michigan
August 19, 2008 at 9:37 am
hey todd and alex,
it’s so great to hear from both of you (both here and in the real world.) it’s fantastic to hear todd’s view so specifically. I can’t wait until he is blogging on his own, and until then you should make the todd interview a regular part of this blog. I miss you both and hopefully that’ll change soon.
August 19, 2008 at 10:41 am
I love that Todd has found his voice and left the rest of us speechless.
I know people have been asking Todd and Alex if they have been watching the Olympics. Todd, you leave all those Olympian athletes in the dust! Is there a platinum medal? Magnesium? Cesium? Thermite? Something that only exists in the core of a star? You wear that medal in the core of your heart, clearly.
August 19, 2008 at 11:05 am
I hope Alex & Todd don’t mind if I tell a story that keeps cracking me up. My favorite Todd quote so far comes from a spontaneous California state trivia game that Alex came up with during lunch (don’t ask).
Alex would point to a sentence on an internet page that Todd would read and phrase as a question (!!!- I was trying not to lose it completely at this point), I would try to answer (badly) and Todd would read the answer. After I couldn’t guess the State Mammal (the what?! we were laughing too hard already), Todd said, scratchily but very clearly, “grizzly bear”.
Later, on this way to a nap, Alex asked if he remembered what the California State Mammal was. With but a short pause he replied, “One of them critters”. Typical Todd, raking in the points for style.
August 19, 2008 at 4:57 pm
Home.
You are both home, together.
Of course, just being together the both of you had already found “home,” but being in your physical address that is home, together, with your own stuff, makes me feel expanded and joyous for the both of you. Such a hard adventure, such a love story. Thank you for the interview, Alexandra and Todd! I could hear your voices, see the twinkles in your eyes… I’m sending hugs to the both of you now!! Go, Todd, Go!!
August 19, 2008 at 6:32 pm
wonders, wonders, wonders. you are teaching us all.
xo sandy+mike
August 19, 2008 at 7:51 pm
Dear Todd,
Renate and I were so pleased to speak with you on the phone today. We also enjoyed your interview comments. We are looking forward to your next call!
Much love to you and Alex,
Dad and Renate
August 20, 2008 at 11:57 am
Yowza !! Tood those words are Todd words. I can hear you loud and clear. I love the precision with which you are describing you intuitions, observations, knowledge. I see the continueum from all the past to this moment in what you say. You are wise my dear, as is of course yer lovely gal, Miss Alexandra! What a great interview. Thank you thank you thank you for this precious gift! You make me feel as high as a kite in the sky!
Loving you two, susie
August 20, 2008 at 11:30 pm
TODD!!!!!!!!!!!!!!!!!!
AMAZING, I am SOOO proud of you for all the hard work you have put into your recovery. And Alex I am so happy for you that you have recovered what you had the utmost faith in…your buddy, companion, and husband!
Absolutely unbelievable and to think I had a small part in your initial recovery…mind boggling.
So, you are home, independently mobile, talking, not only talking, but speaking your mind…and what thoughts at that!
I am just so happy for you both and hope one day to see it with my own eyes.
Todd, just as many others I am certain agree, as mute and helpless you were at times in the beginning of your recovery, you were always VERY important and taken seriously!
Love Stacey
August 21, 2008 at 5:30 pm
So exciting!
Feel free to come see your wall anytime Todd…
All this snowballing of long dormant capacities must be a big leap… it was a long time to lay down!
Travis isn’t big on cantelope either. Totally with you on that one.
August 22, 2008 at 11:33 am
Hey There Sweet Pea!
I am looking forward to our next visit. I was amazed when you were writing notes to Alex and me during my last visit. What a wonderful wonderful time now that you can communicate with all of us. I love you very much and am so impressed on what you can do. We are all by your side eagerly awaiting your next words, thoughts and movements. No pressure…take your time. I am looking forward to our next visit and hope to see you soon.
Hugs and love…baba
August 25, 2008 at 8:55 pm
Awesome and beautiful words indeed, Todd. Thanks for sharing this with your fans!
August 26, 2008 at 2:42 pm
hi todd,
was just thinkin about you, hope you’re doing well!
very excited to hear that you’re talkin and walkin! was very worried for a while- I’m also wondering what kinda food you’ve been eating lately, and what kinda cookin you guys have been up to!
you kick major ass and i hope to see you soon-
love,
marc
August 30, 2008 at 6:35 pm
Wow! This is so fantastic – thanks so much for the interview you two! I’ve been following the your blog and just hoping to hear that your voice would, well, be voiceable again soon – and here it is! Todd, I’m looking forward now to the day you bring out some more new, amazing work. In the meantime, I’ll be thinking of you and Alex and reading along. With affection, from the high desert, Jynx
August 30, 2008 at 9:16 pm
Hi Todd!
I am in NYC for a month putting together an art show. Thinking of you constantly this past year, sending you good thoughts and channeling your amazingness into this show!
Hugs,
Kal
September 1, 2008 at 11:19 pm
The interview is great!
So fantastic to read! Congrats, you’ve come a long way, and we’re all so proud of you!
It’s hard work, I know, but the hard work is obviously paying off already. “Finding your voice”, like the old art cliche, but here such a foundational and important of coming home.
Keep us posted on when the singing begins, that’s sure to be next, right?
Much love and rounds of applause,
Mikl & Danielle
September 3, 2008 at 4:59 pm
Wow, very cool to “hear” your words. Awesome to see the results of all the hard work. I’m proud of both of you for being able to make such an important move forward. Much thanks also to all the folks who have helped make this happen.
Kristi and I are out east visiting family until the 15th. After that I should have some days available so let me know if there is anything I can do to help.
Much Love,
Capt Soggy
September 6, 2008 at 4:51 pm
We are always thinking about you and glad to hear of each and ever step of progress in your life..
you are always in our hearts. We would love to come visit and have you meet our 9 month old baby Azadeh. She is ray of sunshine and it is hard not smile in her presents..
love
c – p and a
September 16, 2008 at 3:13 pm
Sweet hearts!
I hope all is well, and hardworking but loving and rewarding?!
I’ll be phoning one of these days. But for now a big kiss!
September 18, 2008 at 10:01 am
Hola!
My first semester out of CCA and all i can think of is making more stuff (that’s good, right?). I’m so happy to read your words, Todd! Congrats on your amazing achievements. Much love to you both!
Its so good to be able to check in on you two while out traveling- at the moment i am in a giant crazy warehouse space in LA (christian ristow’s old place) and there is so many robotics peeps, engineers, scientists, machinists and scientists here i shudder to think of the interface show we could have
September 23, 2008 at 10:37 am
Dearest Todd & Alex,
I am writing to you from Rome (where there is a sudden summer rainstorm, tonight, so I am listening to the raindrops pound my balcony–and the fig trees below–and drinking a glass of strong southern red italian wine) and I want you to know that I am sending you MORE love than ever, even though I am in the wrong time zone… It was incredible to see you both, at home, being yourselves (including cigarettes + beers in the parking lot…). I can’t tell you how inspirational & beautiful it is simply to be in your (collective) presence. You two have made many miracles together…
I can hear the church bells from San Pietro (the Vatican) chiming–they ring every quarter hour–and I am happy to be in Rome, reading & thinking & eating the last summer peaches you can buy in the open markets. But also, off course, I MISS you & wish I could hug you in person!
xoxoxo
Selby
September 23, 2008 at 8:08 pm
Hey mister!
Good to hear how well you’re doin…you’ll be climbing trees soon enough, I bet. I really would love to see you some time. If you guys need any extra help, don’t hesitate to contact me. I’ve done lots of personal care, etc. type stuff and I can cook!
take care
chelsea
September 26, 2008 at 3:49 am
Love from here Toddy-O and lovely Alexxxx..
September 29, 2008 at 6:55 am
Soooooo happy to read the latest. It’s so easy to forget how the little things we take for granted were all challenges at one point in our life. Alex you’re right, Todd’s words are quite poetic. They sound so beautifully clear w/ an infinite ring. My warmest regards,
Ivria
October 24, 2008 at 12:11 pm
I have been reading about your journey over the last year in this amazing blog Alex has been keeping up. Now that you are home, the journey continues. Being disabled myself, I am very hooked into the disability community and would be happy to share this information with you. You may find, as I have, that you have been initiated into an amazing community, rich with inventive and lively people creating ways to live full and rich lives.