Our Journey with ALS

Why I Walk by Michelle

2011-09-29T22:48:00.000-07:00

The Walk to Defeat ALS in Richmond - October 29, 2011 - Brown's Island

You may think I walk in this for my own benefit. Not directly, of course, but because I am afflicted with this disease, the more money raised could lead to treatments and cures that would benefit me personally.

This isn’t why I walk. This isn’t why I’m asking for your money.

First, I’ll tell you why not for me. I’ve got it good. When I was diagnosed with ALS on October 2nd, 2008, Georgi and I asked the neurologist how long I had before the diseased reached its peak. He said blankly "2 to 5 years." Meaning worst case scenario, I wouldn’t be writing this note right now. Many of you might have attended my funeral by this point. Best case scenario, I’d have 2 more years from today. Just take all that in for a moment.

But I’m lucky. A couple of months after diagnosis, I saw a new neurologist, an ALS specialist, for a second opinion. After some repeated testing I was told that although there was no question in his mind that I was given the correct diagnosis, I belonged to a small percentage of ALS patients whose bodies have found a way to compensate for the loss of function and progress much slower than predicted. While he couldn’t, and still can’t, give anywhere near an accurate prediction of my prognosis, I hold onto the statistics he gave, that 10% of cases may live 10 years or more.

10 years from diagnosis. It will be nearing my 10 year wedding anniversary with my soul mate. My daughter will be almost 9 years old at that point. She’ll be in 3rd grade. I won't even be 40. Again though, I don’t do this for me. I feel I'm the lucky one in all this right now.

I do this for Lucy. Lucy welcomed me with open arms at our first support group meeting. She made me laugh when all I had been doing for weeks up to that point was cry. She encouraged me to eat all of the sweets and fattening foods that I wanted – she said if we’re going to be given this shitty diagnosis, we might as well have some fun and eat whatever the hell we wanted. She showed me that a stubborn attitude is the best medication I can give myself. When her speech was fading, she had actually programmed “Shut up!” and “Are you listening to me?!” into her speaking laptop. Lucy passed away July 20, 2009.

I do this for Craig. Although ALS had taken his speech, there was never any question about how he felt about you. He was one of the few people I would allow to rub my belly when I was pregnant. He showed me how to communicate without ever speaking a word. The joy I saw when he held Aislyn the first time I will never forget and I’m thankful to have a picture to always remember. I went to visit him during a hospital admission. He held my hand and we watched TV. Simple acts mean so many things. Craig passed away May 4, 2010.

I do this for Libby, my continued inspiration that ALS is not a death sentence. Diagnosed at the same age I was, today she is 20 years out from that fateful day. Libby was the first to give me back hope for my life. She was the first person to make me believe that I could still have a family, having had 2 children herself after she was diagnosed. Whenever I feel down, I just think of her and all that she has done, even with this black cloud hanging over her.

I do this for Melanie, another one of us 10+ year anomalies. And while her and Libby are both quite progressed at this point, they forever remind me that there is still time to live.

I do this for Laurence and his lovely wife, Dani, our friends “across the pond.” Diagnosed around the same time as me and with similar onset, Laurence is progressing faster than I. Dani and I were pregnant at the same time, and they now have an adorable son, Stan. I don’t have to question the emotions that they probably feel on a daily basis, having this child they’ve dreamed of and facing this bitter certainty. To know another family facing very similar circumstances is a bittersweet comfort. Every day I wish we lived closer to offer the physical support as well as emotional.

I do this for Shawna, my pink-haired, absolutely crazy and amazing friend who constantly reminds me that as long as we’re “on this side of the dirt” we must be doing alright! I can’t even begin to describe how it’s felt to have what seems like a kindred spirit in this hell, to have someone my age to find humor and support in, and to hopefully provide that back.

I ask for your support for all of these friends of mine. Supporting the ALSA supports the staff that goes above and beyond their job descriptions. Between home and hospital visits at all hours, coordination and arrangement of a multitude of services, equipment delivery & maintenance, or just a friendly, understanding voice to talk to. But supporting our walk and the ALS Association does more than pay the salaries of the people who work for the ALSA.

Donations maintain the support group that I found comfort in after I was diagnosed, and where I met the majority of these people who have touched me in ways that, without them, I may well have just crawled into a hole and waited to die. It provides camaraderie for patients and their families and friends.

Donating provides equipment, often times for free, for people with ALS. Big things like stair glides, wheelchairs, scooters, a multitude of large and small assistive devices. Sarah, our support group leader, would be boxes upon boxes of various gadgets to help with actions you may take for granted but that we have trouble with on a daily basis, like zippers, buttons, holding eating and writing utensils, and even putting on shoes. I don’t think I can even name everything that is or could be provided by the ASLA and their loan closets. Items that can cost thousands of dollars are simply handed over, with the only expectation that it be given back for another family to use one day. Even servicing of equipment can often be arranged with little cost from the patient or their family.

Donating provides co-pay and co-insurance assistance for the inevitable mounting medical bills, no matter your financial class. They provide respite care for people with ALS, giving their caregivers a break from turns into a constant demand for care the further progression goes. And of course no fundraiser would ever be complete without some of the money going towards research. So that maybe these friends of mine who are still living will be around to see us find a cure, and I won’t have to have their names listed as ones who have passed when this time rolls around next year.

I do consider myself lucky. I don’t feel as if I need to beg or plead on my own behalf. I’ve got it good. Instead I will do it on behalf of these friends of mine who have been affected by this disease. Every $1 you give will support them in some way. There are many days I wish this wasn’t a part of my life, but there are so many more where I can actually say I’m thankful to have the opportunity to a part of each of these peoples’ lives and have them be a part of mine.

"For the past two weeks you have been reading about a bad break I got. Yet today I consider myself the luckiest man on the face of the earth. .... I might have had a tough break - but I have an awful lot to live for!" - Lou Gehrig

Donate, walk, or both:

http://web.alsa.org/site/TR/Walks/DCMDVA?px=2848166&pg=personal&fr_id=7454

Buy a T-shirt, either for the walk to just because:

http://www.brownbagtees.com/fundraiser_display_full.php?pID=1518

A Note from Michelle

2011-08-08T09:24:00.000-07:00

If I didn’t have ALS....

I would learn Brazilian jujitsu

I would try one of the careers that I should have done first

…. Police officer

(except I can’t hold a gun steady, or run, and I’d probably end up cuffing myself in a scuffle)

…. CIA agent

(crippled spy? i would be unsuspecting!)

…. Forensic scientist

(can’t even hold a cup of coffee steady. evidence contamination, anyone?)

…. Flight nurse

(still nursing. but I don’t think a power-chair would fit in the helicopter)

I would carry my daughter every second of every day

I would take piano lessons again

Or maybe even upright bass….

I would learn to restore an old car with my own hands

…. buy a busted up ’53 chevy coupe

…. make it the most beautiful car ever

I would hike a very large mountain

(bet I could still, would just take 2 weeks)

I would learn to fly a plane

(steering with your feet takes mad skill)

I wouldn’t worry if I’ll be able to braid Aislyn’s hair one day.

I wouldn’t worry about not being here for my family.

I wouldn’t incessantly rewrite my last wishes in my head.

I wouldn’t need to be thankful for what I still can do, because there wouldn’t be things thing I can't do, reminding me that every small limitation is slowly growing into a much larger one, and there isn’t a thing to do about it except wait - and dream for a cure.

A cure would mean I wouldn’t have ALS anymore.

Saying Goodbye

2011-05-21T20:03:00.000-07:00

We have, for the past couple of years, found a lot of encouragement, support and inspiration from the Proper family. Becky, also diagnosed with ALS at a young age, managed a busy family of 3 with two young daughters while fighting ALS. Fred always offered positive support and encouragement over drinks at our support meetings. We found comradery in being young people. There aren't a lot of us around. I found Becky's passion for living to be contagious and Fred's love and unending support of his wife to be inspiring. It made our first year post-diagnosis bearable. I have a heavy heart in saying goodbye to Becky. I do know that she is at peace but I hate ALS and I hate that it has robbed Becky of watching her girls grow up. I hate that it has robbed Fred of having his beautiful wife by his side. I also hate that we facing the same future. Please help all of us fighting ALS and honor Becky by considering a donation to the ALS Association. The money donated will go directly to assist in patient care (managing extremely high medical bills), will provide adaptive equipment, and will assist in researching to find treatment and a cure for this horrendous disease.

Rebecca Tiller Proper

PROPER, Rebecca Anne "Becky" Tiller, passed peacefully May 12, 2011, concluding her long stubborn struggle with ALS (Lou Gehrig's Disease). Becky was born December 5, and was a member of Woodland Heights Baptist Church. She is survived by her daughters, Caitlyn, and Maggie and her husband, Frederick; her parents, Betty and Robert Tiller; and her sister's family, Beth, Darrell, Hunter and Ashleigh Branch. A memorial service will be held at Woodland Heights Baptist Church at 611 31st Street at 2 p.m. on Sunday, May 22. In lieu of flowers, please consider contributions to the ALS Association and Woodland Heights Baptist Church.

April 2011 Visit to Duke

2011-04-13T20:48:00.000-07:00

We've been feeling really fortunate this year to have Michelle's frequency of visits reduced to about 2-3 times a year with the treatment team. When she was originally diagnosed, we were originally making monthly trips down to Durham, NC to see the team and, while we were always thankful for our team, it was difficult to spend so much time with this diagnosis in the forefront.

With that said, it has been about 5 months since our last trip to the team at Duke. Dr. Bedlack looked stunning, as always, this time around. He wore blue, green and black plaid golf pants, a black leather blazer, and a black leather tie. And, did I mention that he is always rocking his signature faux-hawk? lol One of a thousand reasons that we love him. After doing her neurological evaluation, he said that Michelle was having more progression in her right arms/hands and had more atrophy on that side. Michelle had pretty much pegged that and her right side has been, from day one, the part of her body that she has the most difficulty with. She is still resistant to PT and OT's recommendation for assistive devices, which has now just become a joke among the staff when we arrive.

We did receive some unexpected news at this appointment. Michelle's FVC has dropped a bit and they also have some concerns about her breathing at night. She has began snoring at night, waking frequently, and struggling with overall fatigue (above and beyond her normal fatigue from ALS) during the day. Apparently it is common for folks with ALS to begin having issues with progressive diaphragmatic muscle weakness (in most folks they call this sleep apnea). While most folks who get diagnosed with sleep apnea slap on a machine during the night and call it a day, this diagnosis for folks with ALS can mean the beginning of a decline in respiratory status. Most patients who go onto bi-pap for the evening hours slowly increase its use to a few hours during the day and then to more frequent periods during the day. Some people even make the decision to go forward with being trached and vented.

With Michelle's progression being very atypical and very slow to this point, the news of a possible change in her respiratory status is daunting. The symptoms that we've always feared the most have been her bulbar symptoms. We have enjoyed living in this sort of alter universe for the past 16 months, enjoying our baby daughter and our busy and wonderful life. ALS is now throwing us a curve ball. We both laughed tonight in bed after we talked about how it was much easier to pretend like Michelle does not have ALS. And, while we do laugh about it, sometimes this has been the only way that we've been able to function in our day to day life. Friends out there who have lived with this illness or been the caretaker for someone with this illness certainly understand. Michelle has had almost nothing in the way of bulbar symptoms since her original diagnosis in 2008. And, the truth is, we will not know the full extent of what is going on with her body until she does her sleep study through MCV. We're both sort of hoping that it is just allergies (we can hope, right?).

There are very few moments that make me feel completely inadequate as a partner, but tonight, when my beautiful wife laid in my arms with tears streaming down her face and said "Babe, I don't want to be sick. I don't want to die," I felt the most inadequate that I ever have. There aren't a lot of reassuring words to offer or some miracle fix that we can work toward. All that I could say is that I know and I'm going to be right here by her side for every moment. I feel fortunate, more and more everyday, for having been given the gift of such a beautiful woman to call my wife.

November 2010 ALS Clinic Trip

2010-11-16T11:46:00.000-08:00

MILESTONES - 2 years since diagnosis and Michelle's 30th Birthday

Michelle took her tri-annual trip down to Duke for a check-up to see how she is doing. At our last trip, she was having progressive weakness in her hips, making her more susceptible to tripping/falling and was having progression in her hands and arms. Her FVC rates were still normal, though a little lower. The team urged her to try using a walker to help with stabilization and Michelle all but gave them the finger. *laughs* That is my beautiful, stubborn wife.

This trip went better than anyone could have asked for. Her FVC (forced volume vital capacity) rate was BETTER than last trip! Haha! She also had such minimal progression with her arm weakness that she hadn't noticed any differences. Dr. Bedlack said that he only noticed a very slight change since her last visit, which was wonderful news. The physical and occupational therapists only stopped by for a few minutes because they've come to realize that the only thing that will put Michelle in a wheelchair or walker at this point would be getting hit by a bus.

This trip was a huge celebration, because it marked 2 years since her initial diagnosis. Dr. Paschall gave us the name of Dr. Richard Bedlack and here we are. This trip also marked another HUGE milestone - Michelle turned 30! There is so much to be thankful for. Things are going so well that Michelle does not have to go back for another 6 months.

Walk to Defeat ALS 2010 - Miles for Michelle

2010-11-16T11:31:00.000-08:00

Our friend, Melanie - also diagnosed with ALS in her late 20's

Our little miracle baby

Our friend and inspiration, Libby - also diagnosed with ALS in her late 20's

Our fighter, Michelle

We made it to another year for the annual ALS Walk. October made 2 years since Michelle was diagnosed with ALS. In October of 2008 they were giving us that long for Michelle to live and, here she is, 2 years later, kicking butt. We have felt so incredibly thankful over the past two years to have become linked to our local ALS Association Chapter and our wonderful social worker, Sarah. We have also been fortunate to join the lives of a few families who are also battling ALS. Lucy, Craig, Libbie, Melanie, and Shawna have been our rocks for the past couple of years. Sadly, we lost Lucy and Craig before this years walk. What we are learning with ALS is that loving others with this disease means being prepared for losing them, too.

We felt fortunate to bring our little miracle baby to the walk with us this year. Michelle was pregnant during the 2009 Walk and we were all crossing our fingers that things would go well. With very few women of child bearing age diagnosed with ALS, there was no research on pregnancy and ALS. But we had our incredible neurologist, Richard Bedlack, our incredible OB, Christine Isaacs, and Michelle's fiery spirit.

Thank you to all who donated to support our fight and bring more money to research for a cure and care for those living with ALS. Your donation directly impacts our life every day and we cannot possibly explain our gratitude.

K. Craig Thompson (1952-2010)

2010-05-20T00:09:00.001-07:00

When Michelle and I ventured into our first ALS support group, just a couple of weeks after her diagnosis, we met Craig and his wife, Rita. Craig had an incredible love of life that radiated, even as his body slowly gave in to ALS. Even after losing his voice, Craig shared in our excitement of pregnancy with big smiles, thumbs up, and tons of belly rubbing during Michelle's 9 months of pregnancy. We felt so thankful that Craig was still fighting when Aislyn was born in December. After meeting our parents, Craig was the next person we wanted to introduce our little girl to. He waited with such anticipation for her to be born and was so excited when she finally arrived. The picture above is one of Craig holding Aislyn when she was just a couple of weeks old.

Craig lost his battle with ALS this month. It was devestating for Michelle and I to say goodbye to a man who has been such an important part of our life. Craig fought this disease with courage and humor and brought love and comfort to all who knew him. He will be so missed.

THOMPSON, K. Craig, 58, of Varina, went to be with our Lord on May 4, 2010, after losing his courageous battle with ALS (Lou Gehrig's disease). He was preceded in death by his father, Kenneth P. Thompson. He is survived by his wife of 33 years, Rita Thompson; two sons, Bryan Thompson and wife, Shana, and Justin; one granddaughter, Jessica Thompson; mother, Fern Thompson; two brothers, Kurt Thompson and wife, Jennifer, Brent Thompson and wife, Brenda; and nieces and nephews, Russell, Karl, Brittany and Brooke Thompson. Craig was a UVA graduate, a Certified Public Accountant, and an active member and current past president of the Accountant Society of Virginia. Craig was a former Henrico County School Board member for the Varina District, a past member of the Glendale Ruritan Club and a previous member of the Board of Directors for the Henrico Police Foundation. The family will receive friends from 2 to 4 and 6 to 8 p.m. Friday, May 7, 2010, at Nelsen Funeral Home, 4650 S. Laburnum Avenue, Richmond, Virginia, where services will be held at 11 a.m. Saturday, May 8, 2010. Interment will follow at Washington Memorial Park. In lieu of flowers, contributions may be made to the ALS Foundation at www.als.org.

Aislyn Paige

2010-05-19T23:57:00.000-07:00

I am so far overdue in updating this website. Having our beautiful daughter enter our life has blessed us in ways that we could have never imagined. This new addition, however, gives very little time for updates! I'm going to work over the next few days to update on all of the wonderful events that have been happening in our life, as well as the loss of two friends with ALS, and Michelle's progress with battling this disease. For now, let me introduce our beautiful angel:

Aislyn Paige Fisher-Turner
born on December 18, 2009
at VCU Medical Center
weighing 7 lbs, 11.5 ounces
and 21 inches long

Walk to Defeat ALS 2009

2009-11-09T06:30:00.000-08:00

Our 2009 Walk Team - Richmond PD's finest

Before the walk

We were so lucky to have a HUGE amount of support from our family and friends for this years walk. My Sergeant bought t-shirts for our team and several of my fellow officers joined in the fight against ALS. The rain didn't dampen our spirit and we had a great time. We look forward to bringing Aislyn next year!! Mommy looked beautiful and had a great time. We remain thankful for everyday that Michelle remains healthy. She's kicking ALS's ass!

Baby pics

2009-10-16T14:39:00.001-07:00

baby Aislyn Paige
Due: December 12, 2009

Our big yawning baby girl!

Looking up! She has her mama's fat cheeks!

Tiny hands...so incredible

Sleepy baby girl

We were so excited to have the 3-D and 4-D ultrasound. It was incredible to watch her move around, open and close her eyes, and yawn. Our favorite part was her repeatedly trying to stick her foot into her mouth. She kept opening her mouth and trying to suck on her foot, but she couldn't figure out how to get it in there! It was cute! I can't wait to meet her in person!!

Nursery and other Updates

2009-10-16T14:27:00.000-07:00

I'm so far behind in updating! Yikes! It has been a VERY busy 5 months! Michelle and I found out 3 months ago that we are expecting a little girl. We've chosen the name Aislyn Paige. In Gaelic, Aislyn in a derevetive of Aishling, meaning "dream." Since our little girl is our dream come true, it was only appropriate. Her middle name, Paige, is after my sister, Wendy Paige, who died in 1996. We can only hope she'll carry a little bit of her fiery spirit!

We have completed the nursery. While I originally had my heart set on the John Lennon nursery collection, Michelle and I compromised on a beautiful jungle print. I hated the brown jungle nursery sets but we were lucky enough to find one that has various pinks, purples, yellows and blues. The picture above is when we first started working on it. I need to take some updated pics because it has really come together beautifully.

Michelle is doing VERY well. Other than some mild effects on breathing (not enough to warrant a bi-pap) and some stress on her legs, causing a great deal of leg weakness, she is hanging in. Our visit to the ALS Clinic was positive and everyone was happy to see how well she was doing. Its always a bit of a guessing game with the pregnancy because there are VERY few women of child bearing age that have ALS.

We are busy preparing for Aislyn's arrival and getting ready for the annual Walk to Defeat ALS. We are so excited to have many folks from my police department joining us in the walk. Check out the link to our page (above) and join us or make a donation! Every penny goes towards finding a cure for this progressive, fatal disease.

11 weeks

2009-05-20T21:30:00.000-07:00

11 weeks

Michelle hit 11 weeks yesterday. Amazingly, she awoke the day before with a beautiful new baby bump. She now rests her arms on it and I find her cuddling it (or protecting it). Too cute!

New pics

2009-05-19T15:21:00.001-07:00

Words for a tough day.

2009-05-06T12:09:00.001-07:00

I draft this writing,
Millions of thoughts pouring out
Onto blank pages
To be Edited over and over again.
How do I accept the unacceptable?
How do I face your death as reality and
The end of our love as imminent?
I work feverishly to push it away…
This idea of someday
When today is slowing slipping away.
How do I preserve every moment
To relive our love for one another in pictures, film, and love notes scratched onto scrap pieces of paper?
How do I convince myself that somehow today will be enough?

Having a tough ALS day.

2009-05-06T12:06:00.000-07:00

I'm not sure why. I just am. I had to talk about it today when I off-handedly mentioned Michelle getting fitted for braces. And then had to explain why. And then had to explain what it meant. And then I cried on the way home. I know we're doing fine. She's so strong that nothing seems to slow her down. She gets tired and frustrated, but she keeps going. I think being at the doctor yesterday made me have to acknowledge, again, that it is there. There are days where it is really real and other days its just sort of in the background. It makes me sad when I let myself think about it...the shitty parts of it. The reality that there will be a day one day when she won't be here...

I'm not lying when I say I have no idea how to live without Michelle. I can't remember life before she was apart of it. Her friendship early one was something that kept me motivated and mellow at work. Tough cases and clients were balanced out by her twisted since of humor and her sweetness. As a partner, she has balanced me, challenged me to be a better person, and held me when days were bad. I'm not sure how it happened, but when I fell in love with Michelle, I fell hard. I'm so unbelievably smitten with her. Looking at her makes me smile. Touching her soft skin makes me feel at peace. Watching her belly grow as our baby grows makes me feel incredibly proud and incredibly lucky.

I don't want to think about those days. And, for the most part, I try to live in the moment. But today, for some reason, its hitting a little closer to home. God gave me an amazing gift when he brought Michelle into my life. I know that there is a greater plan and purpose...but, selfishly, I also know that I don't want to know what it is like to live a moment without her. Hopefully Syd's stem cells will open up a world of possibility one day. Treatment, a cure, who knows? Sorry for the sob fest. Just needed to get it out. I love you pumpkin butt.

A long day!

2009-04-29T17:11:00.001-07:00

Michelle and I had a long day of doctors appointments. We went to Powell Orthotics first thing this morning for Michelle to do her casting for AFO. She'll have her brace in 2 weeks. We were surprised to find out that they couldn't make them in anything other than the ugly white plastic crap. We decided that when we picked up her brace, we would take it to Salvation Tattoo for a makeover. Hopefully involving a custom piece that will make her proud to where her brace (and compliant with it, too). =)

After our appointment at Powell, we had back to back doctors appointments at MCV with our OBs. We met with Dr. Peng and had another ultrasound today. It was incredible. We were able to see our baby's heart beat for the first time and it made me cry. There is something surreal about seeing this living thing that you've created. So wonderful and overwhelming. Dr. Peng was very optimistic about Michelle's pregnancy and delivery. He stated that even if she was paralyzed by the time she delivered (which there is no way in hell she will be), she would still be able to have a vaginal birth. He said that the body can work around ALS without a problem. This was a relief for both of us.

We also met with our regular OB, Dr. Isaacs. She is so full of happiness! She did the routine blood work, exam, etc and met with Dr. Peng to figure out where we stood with the pregnancy. It looks like everything is going super well. We'll go back in 4 weeks for another appointment and ultrasound. It is wonderfully exciting to get to watch our baby grow in pictures.

If this is less than articulate, it is because I've only slept 4 hours in the past day or so. I'm exhausted and am heading to bed in just a few.

But before I go, I have to say thank you to Jason. He put together an amazing video/photo show of Michelle and I's wedding as a gift. It meant so much to us both and will allow us to continue to relive our amazing day over and over again. Jason, Tammy & Rae have been God sent. I'm not sure what else you could call it. We're just thankful. If you need a photographer please check Jay out (www.jasonkeefer.com).

Life with a growing baby.

2009-04-26T22:28:00.000-07:00

Things are going very well. Michelle is hanging tough and stealing away moments to rest. She continues to struggle with nausea, which sometimes turns into vomiting. I'm still not sure why they call it "morning sickness" because she's sick in the morning, afternoon, and evening. She is sleeping well and, as the first trimester is ending, is finding more strength to get out of the house and do things. Today we spent the afternoon in Carytown, shopping in some of our favorite shops (World of Mirth, 10,000 Villages, and ice cream at Bevs). We picked up a beautiful mobile from 10,000 Villages for the baby's nursery. It was made in India and has colorful fish and small bells. It is musical and vibrant, which I'm sure will make Syd quite happy when he arrives.

We had our first ultrasound last Thursday and have 2 more scheduled for this Wednesday. So, here is the fun of being a high risk pregnancy! *laughs* The above ultrasound is from last week, and you can see one small peanut of a baby hanging out there. There is a second sack that is kind of hiding, but we're all pretty sure that there isn't a second baby there. Wednesday's ultrasound will confirm that. The peanut was still too small for us to see it's heart beating, but we look forward to seeing that this week. Michelle was very happy to get Dr. Peng as our high-risk OB. Several of our friends have had him as an OB or worked with him and all hold him in high regard. It is a strange dynamic to walk this line of pregnancy with Michelle's ALS. It is so important to have someone that we trust, as well has have someone who we know will be able to handle "worst case scenario" situations without risking Michelle's health or the baby's health.

Michelle was also able to get Dr. Isaac's as our regular OB. She is the wife of Jonathan Isaacs, the doctor who is responsible for Michelle's ALS diagnosis and also a long-time coworker of Michelle's. Michelle has been chomping at the bit to get Dr. Isaac's as her primary OB, but she was booked into August, which put her out of reach for us due to the number of times Michelle has to see the doctor. However, a few strings were pulled last week and we're seeing her this Wednesday. We're both excited to have her as our physician.

Outside of baby life, we're hanging in. Michelle's hoping that Powell Orthotics will be able to make her AFO's in zebra print. Why not? Leave it to my beautiful wife to make AFO's trendy. I'm spending time working with a new facet of my job for RPD. We've started a new outreach program, RESET (Rapid Engagement of Support in the Event of Trauma), that goes into communities, mainly after homicides, to offer services and education to it's residents. We're working really hard to try to acknowledge the great trauma that witnessing homicide brings, as well acknowledging the trauma that occurs when individuals live/grow up in neighborhoods where violent crime happens frequently. I'm excited to be working with a great group of colleagues from Richmond Behavioral Health and Child Savers.

Michelle and I are planning a trip to New Orleans in June. It'll be an early birthday present for me and our last chance to vacation to the city before the baby arrives. This is the start of our leg of trips. We're flying out to the UK in September. The plan is to start off in Dublin, head to Derry, N. Ireland to visit with friends, fly over to London to sight see, travel down to Brighton to visit with another friend, and then head up to Manchester to visit with more friends. Michelle has never had the chance to go to the UK. She has also become good friends with a couple in Manchester, one of whom is living with ALS, also. We love to travel and have always done it frequently. This past year we went to Cape Cod, Boston, San Diego, and, of course, VA Beach.

Michelle has always wanted to travel. She has an appetite for new experiences and new places. Since the ALS diagnosis, this has been moved to the forefront of our plans. So many things have changed in our lives. We're seizing every opportunity to live life. Tonight, however, living means that I get to curl up next to my wife and fall asleep to the soothing sound of her sleepy rhythmic breathing.

More pics from the wedding

2009-04-21T07:26:00.000-07:00

We were so lucky to have our friends, Jason and Tammy Keefer, shooting our ceremony. Our wedding was incredibly important to us both, and will one day serve as a photo book for our child of his mother and her life/legacy. The importance of capturing the moment was so important - and J and Tammy did an amazing job. They use a photojournalistic style of photography that captures each picture in its point in time. Looking through the photos is reliving our wedding day over and over - what a gift. Both photographers are amazingly giving, incredibly gifted, and we were so lucky to have them. Check out their site: www.jasonkeefer.com

This is our end of wedding exhausted picture

ALS Association Bracelets we gave to our guests to commemorate our wedding with a donation to the foundation in honor of our guests.

Steph & I having one of our "real" hugs

Quillin and Steph - I love this photo

Beautiful cake table

Carrie, my dear friend from college

Chris & Kristin - friends from MCV

That cake was not only beautiful, it tasted AMAZING!

Our picture - this is hanging in our entry way now.

I love this picture of Quillin.

At the Chrysler Museum of Art

With our flower girls and ring bearers

Michelle's bridal party

With my entire family - minus some sibs and cousins - impressive, right?

Just married!

Right after the ceremony - with Jeanette and her mom, Shelley

There is no doubt that we are IN LOVE.

Our bridesmaids - there were 8 in all

Just pronounced!

Unitarian Church of Norfolk

My mom and I

Tracy, Michelle, Jeanette, Ife and I

I am smitten, what can I say?

with her mom, Shelley

Do I always look this intense when I play piano?

Trying to explain to a 3 y/o why I had a space cast on

I'm so proud to call her my friend - Quillin

Beautiful Jeanette

Have to have a little fun, right?

More than halfway through the 1st Trimester

2009-04-20T21:12:00.000-07:00

My mornings are spent in awe of my wife's growing belly. I have to say that there is great truth to the beauty of a pregnant woman. I was beyond smitten with Michelle before the pregnancy, but she has this glow, this aura, if you will, that just radiates from her. We went to a Leukemia Society benefit for our friend the other night. It was the first time she's been dressed up since we got pregnant. She was stunning. And her growing bump was quite evident, at least to those of us who know her!

Our first ultrasound is on Thursday. We're keeping our fingers crossed that we'll make it under the 2 mark. We didn't realize when Michelle started taking Chlomid that she was at such a high risk for multiples. They left that out. The great focus has been on hurrying up and getting Michelle pregnant. While initially hesitant, her treatment team gave us the go ahead to get pregnant. They told her that if she wanted to carry to child it had to happen now, not later. Pregnancy means sacrifice for Michelle. She can't start Rilutek until she is no longer pregnant and no longer breast feeding. This is the only FDA approved medication to "treat" ALS. It doesn't do a whole lot, but it adds a few months onto life, and that is a lot in our eyes.

There are lots of people in our life who don't know that Michelle has ALS. We went to a party and there was a lot of catching up to do. I guess those who are super close to us (or Facebook followers) are up to speed. Its funny how many acquaintances we have that had no idea. The pregnancy is giving us a chance to focus on something wonderful and exciting. That is nice. We laugh about how our children will be - thinking about our own attitudes and isms as we were growing up. It is a blessing that Michelle and I cannot combine our DNA. God knows what kind of child we would have! Here is to hoping that our donor was a saint of a child! *laughs*

There are lots of fun changes. We're moving out the last of the non-baby furniture this weekend. We're buying one piece of furniture every month to put together and put up. We've found a birth doula who is a RN with 16 years experience in nursing. The last 6 years have been in medical hospice, doing A LOT of work with people who have ALS. She knows about ALS, its challenges, and also has a stellar reputation on our L&D Floor for being a great doula and advocate. We're buying a half share with a local CSA for the spring, summer and fall. We're so excited about it. Fresh vegetables, fruit, herbs, and eggs delivered every week - all organic and all hormone free! This is great for my wife and our growing babies.

We're thinking about names. All kinds of names. I tried to convince Michelle that we wanted to change our names to something Irish so that it would go with the boys names that I've picked out. She just laughed at me. Do you think that was a no?

Michelle is doing pretty well. The first trimester has brought a great deal of nausea and extreme fatigue. I make fun of Michi, calling her a narcoleptic because she falls asleep constantly. We're managing her leg weakness with spiffy leg braces and have a really funny medical recliner, too. I told her I wanted her to have one of those seats that projects you out of it (when you don't have enough leg strength to get up on your own). We've heard about folks from our support group getting catapulted across the room from one of those. I think Craig got thrown out of his desk chair.

Our stair glide (just think Gremlins here, folks) is being delivered. It doesn't sound like its going to be as crazy as we thought getting it into our VERY narrow hallway. When Michelle and I bought this wonderful c. 1900 row house, the farthest thing from our minds was the thought that we'd need to be handicapped accessible. We are built with a retaining wall...5 steps to the front porch from the sidewalk, 1 into the door, and a really impressively narrow entry way/hallway and an even smaller stairway going upstairs. I guess folks in 1900 just weren't fat. Or disabled. The chair on the stair glide flips up to get out of the way, which will be helpful. I know it will help Michelle a lot, especially as our babies continue to grow larger. She has already gained an impressive 10 pounds! The Duke Clinic dieticians will finally be able to get off her back for not maintaining her weight! Who knew that pregnancy was the key to doing this - not Boost shakes?

I'm looking forward to the 2nd Trimester, when my wife joins the world of the living/awake again. I'm also looking forward to seeing our little bits faces for the first time on 4-D ultrasound during that time!

Saying Goodbye to an incredible woman...

2009-04-09T20:42:00.000-07:00

One of the greatest strengths and comforts we found after Michelle's diagnosis was in our friend, Lynn, and her partner, Barbara's courageous battle with cancer. Barbara was diagnosed with cancer several months before Michelle was diagnosed with ALS and was fighting a tough, fierce battle. She continued to practice as a social worker, traveled extensively, and safaried with Lynn just two months ago. Both women showed us what it means to live with courage and with reckless love. They fought terminal illness with integrity and fierce determination...and they carried Michelle and I through some of our darkest days early after Michelle's diagnosis. A couple of weeks ago Barbara passed away at her home with Lynn, her dogs, and her beautiful family. It has taken me a few weeks to be ready to post this. Barbara's passing hit us in a deep place where we continue to face our own mortality. It is my hope that we will both be able to live life and face death with the beauty and grace that Barbara did.

WUST, Barbara Susan, 54, of Richmond, Virginia, crossed the Rainbow Bridge on March 19, 2009 surrounded by loved ones and her beloved dogs, at her home after a courageous battle with cancer. She was born on February 26, 1955 in Paris, France and grew up in Arlington, Va. and New York City. She settled in Richmond in 1997 after living in England, Australia and Germany and much international travel. She graduated from Virginia Commonwealth University and worked as a compassionate therapist for the last 12 years.

Barbara lived her life to the fullest -- traveling extensively, raising and competing with championship agility dogs and working tirelessly to improve the lives of countless people. She will be remembered as a joyful healer, a feisty competitor, a generous spirit and a giving teacher. Her life was a source of inspiration to all those who knew her and loved her.

She was preceded in death by her father, Klaus Wust. She is survived by her partner, Lynn Anderson; her mother, Monique Fong Wust; her sister, Francoise "Sassie" Joiris; her nephew, Julian Joiris; her niece, Celine Joiris and many aunts, uncles and cousins abroad. A memorial service will be held in the summer.

In lieu of flowers, contributions can be made in Barbara Susan Wust's name to either Therapy Dogs International, Attn: Donations, 88 Bartley Road, Flanders, N.J. 07836; or Bon Secours Health Care Hospice, 5875 Bremo Road, Suite 710, Richmond, Virginia 23226.

We made a baby!

2009-04-09T20:16:00.000-07:00

We have some AMAZING news!! WE ARE PREGNANT!!!! I can't even believe it. Our little zygote has turned into an embryo and has a tail and a head now. Its a bit strange, really.
Michelle has been doing really well. She's eating very well and often informs me that the "baby" needs food - slim jims, slurpees, etc. Luckily she's feeding it good stuff, too. I told her our kid was going to come out saying "Snap into a slim jim!"

We have our ultrasound next week so that we can play the "count the number of babies" game. Hopefully there is only going to be one little baby in there. We're so excited. It has been along time in the works and it feels so strange that its actually happening now. I can say that there probably hasn't been another baby that was wanted as much as this one.

The good thing about being stuck in the bed is the fun of doing a baby registry. First off - why do babies need so much stuff??? Holy cow! And there are so many choices. We found this awesome stroller system that had big wheels that were perfect for city walking. Then we read reviews and found out that the wheels fell off! Thank goodness for people who give reviews. Its strange how many gadgets babies need. We are going to give cloth diapers a try. We put cloth diapers and rubber pants on the registry. I have no idea how it will work, but hopefully I'll figure out how to fold the things. Is there a class on how to fold diapers??

Michelle's stair lift is being delivered next week. I think it'll be super helpful for her. Our social worker, Sarah, is fucking amazing. You just talk to her and it becomes her personal mission to make everything ok. I could have never imagined how lucky we would be to find her or our support group folks.

2009-03-30T00:10:00.001-07:00

I'm starting to come out of a clouded haze of heavy meds and am feeling ok. Michelle has been a super nurse today (as always), coddling me and hanging out with me in the procedure room until they put me to sleep. She even offered advice for starting my IV to the nurse who was caring for me. Found out today that I have gastroparesis. It is injury to the vegal nerve that connects to my stomach. That nerve is what makes my stomach muscles move to push food out of my belly. It was screwed up during my lap band surgery, I guess, causing paralysis on the stomach muscles. Its not bad for me, but explains the nausea, vomiting, belly pain, and reflux. It isn't something that can be repaired but they're going to try me on some meds to see what happens. I have an appointment on Monday with my surgeon and I'm signing up to have my lap band taken out. Not excited about the problems that I've been having. I may elect for bypass, but am not sure at this point. Thats the exciting news for today.

Otherwise life is going pretty well. Michelle and I have had some time off together, which has been nice. She's doing pretty well. She's having a lot more difficulty getting up stairs and is finding that she is getting tired more easily. We went to the Irish Fest for an hour or two and she was exhausted when we got back to the house. She also has been complaining of difficulty with her arms. She was laying on the floor with Barney the other day and had difficulty petting him. She said that she was exhausted. But, she's doing an awesome job with finally accepting help from folks. She's talking to Sarah Stein, our ALS social worker, on the phone as I'm typing this. She's getting fitted for an AFO and that will help a lot. We've also talked a bit about the possibility of getting a scooter or chair when she is further along in her pregnancy. I'm trying not to pre-plan too much, but am also looking at how tired she's been getting lately with just walking around. She's a trooper, though. With the belly straps, the braces, and the occasional use of a chair, she'll be ok. Can't wait for the day that she is fat with baby, which will be fantastic. As a side-bar to this, we found out the other day that a wheel chair will fit into the trunk of a Toyota Matrix, which is the car that I've wanted to buy. I know that a scooter won't work so much, but it was exciting to see that a chair could go back there with room for a baby stroller - or two.

We found out that we're looking at a 1 in 4 chance of having multiples because of the fertility meds Michelle has been on. They call them clomid twins. We were already at a higher rate of multiples because of the way that we're doing insemination and the clomid has a bit more to our chances. Michelle is hoping for twins, I think. I told her that if we had more than 2, I was giving them away as Christmas presents. Seriously, though, she wants to have two children but knows that I'm against her getting pregnant again if it has adverse affects on her body. She is super hardheaded. We'll see what happens. If we had twins, they would be fraternal twins, which would be cool, I guess. Poor Quillin will really be overwhelmed with babies in the house!

Life is going well. I start nursing school in a couple of months. The summer will be busy. I've got to take a Chemistry class to make up for my crappy high school grades. I'm also taking an Anatomy and Physiology course and a dosage calculations course. In the fall I'll be doing some intro nursing classes and then in the spring will be doing clinicals. I'll finish up clinicals next summer and will be able to sit for my NCLEX exams (for licensure).

We had a good laugh today when we got my high school transcripts in. I graduated with a 1.6 GPA and graduated 266/350 students. *laughs* Hard to imagine that I graduated from college with honors, isn't it? Hopefully I'll do well in nursing school. I'm pretty stoked. After I finish in the summer, I can start VCU's online RN to MSN program, which will be good. I'm excited to be in psych nursing and have the opportunity to sink my claws into some new experiences.

I'm preparing for the possibility of a couple of surgeries in the next several months. The foot is back in a boot cast and the belly is up in the air. The foot surgery will be super quick, a long weekend, really. It is only a 6 week healing time since it didn't end up being an achilles injury. This means that I should be in good shape to start rugby, which will be good for my lazy butt.

Michelle is just amazing. I realize more and more each day how lucky I am to have her as a partner. She takes life in stride and balances life out for me. I know that her ALS frustrates her but she seems to be opening up more and more to ideas to adapt her life. It makes me proud of her - her strength, her courage...her fucking determination! She makes me endlessly happy. I'm lucky. Very, very lucky.

We got married.

2009-03-13T21:54:00.000-07:00

The past several months have given Michelle and I a bit of a reprieve from the daily struggle with ALS. While March held a trip to the Duke ALS Clinic and the National Institute of Health, somehow a great deal of our focus managed to say on our ceremony. On March 7, 2009, Michelle and I made our marriage and our commitment to each other public when we had our ceremony with friends and family in Virginia Beach, Virginia. That day allowed us both to celebrate the true gift that we were given in one another. The photographs below are from our ceremony and are courtesy of Jason, Tammy, and Rae - amazing photographers from Jason Keefer Studios (www.jasonkeefer.com):

As we continue to move forward in life, I'm trying to challenge myself to live more in the moment. Our trip to the NIH challenged both of our strength reserves, but our trip a few days later to Duke seemed to put us at peace again. Dr. Bedlack (Michelle's neurologist) has an amazing gift for providing a calm reassurance.

Michelle's ALS has progressed slowly for the past few months. Her hands are more affected and frustrate her when she's trying to hold onto things. There has been an increased amount of cursing in the Turner-Fisher household lately, but she is finding new and innovative ways to adapt. Wonderful wedding gifts from friends have provided her with ALS friendly kitchen contraptions that make cooking a lot easier and allow her to enjoy that one thing that seems to bring her peace.

She has been experiencing greater progression with her right foot. They call it "foot drop." I have always called it her retarded foot. She was given a prescription for AFO's (ankle-foot orthotics - see pic to the right) over a month ago. She has, so far, refused to get them made. I made her promise that the first time she fell, she would go get them made. She almost busted her face on my mom's steps but is still staying stubborn. She did say the other day that she would go ahead and get them done if our ALS Association social worker, Sara, would tell her where to go. I'm going to send her an email tonight now that I'm remembering it! They have awesome AFO's where she can pick out the colors and style...sort of like a long-term cast, I guess. Initially foot drop stressed me out...sort of like one more reminder that ALS is still here and creeping in slowly. The reality is, however, that now I look at it as something functional. My biggest fear is that she will fall when she is at home alone. She always says that she is fine. I try to believe her.

Outside of the daily stressors of ALS, we're still trying to move along with life. We're trying for a baby and that is both joyous and frustrating. Ovulation prediction, medication management, high risk obstetricians, and the unknown present a stimulating but sobering look into our pregnancy future. Michelle has become a champ, however, at maintaining her weight and has finally gained a stomach for her prenatal vitamins. We haven't had to pull over to the side of the road for her to throw up in weeks!

I'm trying to stay positive, though sometimes I find it difficult. Michelle and I seem to take turns being overwhelmed with this disease. That has given us both the ability to find comfort in the other's optimism. I still pray everyday for Michelle to be healed...and for us to still be lounging in each other's arms 70 years from now. I know that I'm supposed to pray for "thy will, not mine," but I'm not there yet. I have too much hope.

December never felt so wrong...

2008-12-27T20:09:00.001-08:00

"This is my winter song to you. The storm is coming soon, it rolls in from the sea. My voice a beacon in the night, my words will be your light, to carry you to me."

The past 48 hours have been tough. I'm not sure why. Our visit with Michelle's treatment team was very positive this week. I still find myself waking each morning with the hope that this will all be a bad dream. I trace the soft skin of her arm, the back of her hand, her fingers, as she sleeps peacefully. It is in those moments that you could almost forget that this disease is slowly killing her. Those moments where we are at complete peace...where life is just the way that it has always been, and every minute is just as it should be.

A slower progressing form means 10 years...maybe she'll be lucky and have 18 years, like our friend Libbie. The truth is that I am not happy with 10 years. I want longer with her. In 10 years we will be 38. In 18 years we'll be 46. I know that this is a lifetime for people with ALS. Most are lucky to have 2 years after their diganosis. But my heart aches at the thought of not having her in my life. I have spent a lot of time over the past two days quietly stealing away moments to cry. Moments spent negotiating with God to make this go away.

"When you're young you have this image of your life..."

I am searching for answers and finding very few. I am praying for someone to teach me to live life without fear, love my wife with wreckless abandon, and cherish each moment that we have together. I want to be grateful. I want to believe that everything happens for a reason. I want to have faight in God's plan. I want all of this while struggling with the intense love that I feel for Michelle. This love that God gave me, this relationship a cherished gift. I have a hard time finding gratitude while wrestling with anger and sadness.

"Life will find a way. I'll be your harvester of light and send it out tonight, so that we can start again."

Christmas

2008-12-24T20:50:00.000-08:00

It isn't Christmas without fantastic pictures. Michelle and I both felt blessed to celebrate this holiday with a renewed sense of hope. Our visit with the Duke treatment team this week has allowed us to take a few breathes and make an attempt at living life again. Our focus has been put back to the place where it needs to be. No more planning for adaptive equipment, end of life care, home health aides...today we are planning for our family, our wedding, renovations that we want to make in the house, and trips that we have been wanting to take. My beautiful wife inspires me everyday. I never imagined that I would find another person who completed me the way that she does.

Merry Christmas!

Ask me about my motor-neurons!

2008-12-24T20:38:00.002-08:00

(Our Neurologist - Richard Bedlack - aka British Rocker

We went on one of our now routine trips to Duke over the past couple of days. We were still filled with nerves yesterday preparing for the appointment. I had a stomach ache all evening and through-out the night and neither of us slept. I woke up around 7:30am this morning and was ready to hurry up and go to the appointment. I was trying to just hurry up and have it over with. Trying not to face it. So, I'm still struggling between the first two stages of grief. Sometimes I deny it and sometimes I am angry about it.

Today was a different experience. Saying that it was different wasn't to say that our routine changed any. We came in and met with the Respiratory Therapist first. Michelle did well on her Transdiaphragmatic pressure (the strength of her diaphragm muscle). She rocked out and got 100% (this assisted her in avoiding being put on a by-pap). On the Pulmonary Function Test she did pretty well. They worry when you're at 60% and today she was at 89%. She was at 100% last time we were there, but we're chalking this poor measure on her being a bum with her testing.

After Respiratory, we met with the dietitian. She basically gave Michelle permission to take in as much calories as possible. Gone are the days of having Boost shakes for breakfast. She has to eat 6 meals a day and they encourage high fat milk, cheese, sour cream, and just about ANYTHING else to be added to each of her meals. The goal is to keep her maintaining a healthy weight, especially to prepare her body for the pregnancy. She has lost about 4-5 pounds this month, without trying. It'll be a change for her, but I think it is great to let her know that she has the freedom to enjoy food.

After the dietitian, we met with our neurologist, Dr. Bedlack. We fondly refer to him as our British Rockstar (see picture above - yes, that is him speaking!). We sort of stress about meetings with Dr. B. At least I do. But today was AWESOME! It sounds depressing initially. He informed Michelle that she has lost a great deal of neurons and nerves in her legs and arm. This loss usually equates to loss of movement. However, he told Michelle that on her last EMG it showed that the nerves that were still alive had regenerated to the muscles that had lost nerves. Basically, one nerve is doing the work of all of her dead ones. The impressive part is that, for the most part, they're still able to support her body. She is still able to walk, to use her limbs, etc. He said that this is awesome news for Michelle and that this means she will have a slower than normal progressing form of ALS. He also gave us another *tiny* glimmer of hope. He said that a few of his patients have had this type of ALS progression. He said that 3 of them had progressed to a certain point and then the disease progression stopped. This means that they may have lost some function but at some point the disease stopped and it didn't end up being a situation where they were vent dependent and were still able to live through the disease. He didn't tell us that it was going to happen this way for Michelle, but he said that there is always hope. ALWAYS HOPE! That was enough for us both. God works miracles everyday and the fact that Michelle's ALS is slow progressing is something that we are both thankful for.

After this great news we met with the OT and PT. They were both utterly impressed with the brace that Lara, the Director of MCV's Hand Clinic, made for Michelle. She used a material that the Duke therapists hadn't seen before that is super light weight. They were also impressed with the functioning that the brace brought to Michelle's hand and fingers. Michelle was happy to show it off, including how it was specially designed for her (black and purple!).

At the end of our trip, we received a cool goody bag of ALS schwag. Michelle also picked up a shirt from the Duke Clinic that says "Ask me about my motor-neurons." Hilarious! It is great to leave our appointment with a sense of humor and a renewed sense of hope. We couldn't have asked for a better day than this one. God is working miracles and I cannot tell you the relief that I felt today.

Random

2008-12-24T20:38:00.001-08:00

It is Tuesday night and I am laying in bed with the flu. My poor wife has taken amazing care of me for the past few days while I've thrown up, had other nasty issues, had chills, had fevers, and broken down crying in the floor of our bedroom at 2:30am. She is, luckily, at work now and has yet to catch this funk that I brought home. I figured my inability to do anything other than lay in bed warranted time spent updating everyone on life.

Michelle and I are in the midst of baby-making. It is a fun process...though not as fun as the actual thing, I imagine. Pee sticks are our daily friend and Michelle has mastered the prenatal diet and vitamin taking (minus the taco bell she ate tonight). We're starting to think about moving stuff around in the other room to start nursery arrangements.

The wedding is getting closer and closer everyday. Having eloped in California originally, I now understand WHY people make that choice instead of going through the whole mess. The planning and money that are going into this is pretty incredible. I am sure that it will be a day that I will never forget and will fulfill that childhood dream of having a formal affair in conjunction with my lifelong commitment to my partner. We are most excited about the photo booth that we will be having at our reception for guests! It will allow everyone to take silly pictures to leave with us for scrap books! I can't wait for that!

We were able to celebrate the launch of my friend, Quillin's, Anti-Violence Project this week. I was so excited to see all of her hard work pay off in the launch of the program's separate entity from Equality Virginia. Quillin has inspired me with her work from the day that I met her and I was excited to be there and be apart of yet another success that will bring services to many victims of violence. A side note to that is that I was finally able to introduce my wife to many folks that I've worked with over the years - Stacie, Lisa, Liz, etc.

Work is going ok. I made a big screw up on an investigation that is getting ready to become high profile. I'm more stressed about it than I should be (given the fact that I was entering notes at 4:30am after being at work for too many hours). My boss isn't that stressed out, either. It was really a small error that has been permanently saved in a HUGE investigation. I'm going to give myself permission to let this go in an hour or two. Obsessing is my hobby.

The ALS journey is going. Michelle is waiting to hear where she will be transferred to at MCV. I've also been debating changing jobs in order to work day hours. I love the work that I do right now, but it is often filled with 60 hour weeks, long evening hours, and a lot of time missed at home. I have a hard time justifying the time spent away when the reality is that Michelle and I may only have a short time together. With her being transferred out of STICU, she will be on day shift and I will be on night shift. If I stay with SRs it means that I will hardly ever see her. It also means a job transition that I wasn't ready to make and another upheaval. I've applied for a few positions and am just waiting for God to point me in the right direction. (Thy will, not mine - easier said than done sometimes...)

Our next appointment with the Duke team is next week. I'll have more information then about our next steps. Everyday seems to reveal more and more information...and, perhaps, more and more acceptance.

We're looking forward to Christmas with our families. We have, amazingly, finished all of our Christmas shopping and have everything wrapped. We had to put the gifts on top of the fridge and pantry in order to keep certain 4-legged kids from tearing them apart. The Christmas tree has become their personal play toy.

16 Things...

2008-12-24T20:37:00.000-08:00

Rules: Once you’ve been tagged, you are supposed to write a note with 16 random things, facts, habits, or goals about you. At the end, choose *16 people to be tagged. You have to tag the person who tagged you. If I tagged you, it’s because I want to know more about you, or because you've played a meaningful role in my life recently or in the past, or all three! I apologize if you’ve been tagged before!

1. I have an unrelenting fascination with acoustic guitar and performers who play acoustic sets. The ambiance is incredible and it makes my heart flow with thoughts for my own music.

2. In the past 8 years I have been to 4 universities, working on 3 degrees and a professional certification. I think graduate school is a professional hobby.

3. I am the co-owner of a beautiful row house in Church Hill (c. 1900). Our floors are uneven, our mantles are beautiful, and it is slowly becoming the "dream home" we had imagined it to be almost a year ago.

4. I played classical piano for 10 years. I hardly ever get to play these days and I miss it.

5. I was a ballerina for 13 years. Can you picture it? I wore tutus, danced on stage, and can still give you every ballet position. I can still do an arabesque (only a low arabesque on flat).

6. I am a recovering junkie. After 6 years of tortuous hell, I was blessed enough to stumble into the rooms of Alcoholics Anonymous. It saved my life. More than once.

7. The color blue makes me melt. Any shade, any place, I love to be surrounded in it. Almost every item we've bought for the nursery is blue...except for the pink elephant Michelle picked out.

8. When I was 16, my older sister, Wendy, was abducted and murdered in Richmond. Her death, while paralyzing to me for quite some time, gave me the strength to follow my dreams. Her death also gave me a unique perspective in my professional career. When I offer support to my families, I can honestly say that I have been in their shoes.

9. I originally went to college to become an English professor.

10. I fell in love with and married my undergraduate intern.

11. It takes two hands to count all of my siblings. I have 4 half siblings, 3 step siblings, and 2 adopted siblings. Raising children was my parents hobby.

12. I have books upon books of my own poetry. I've kept journals of poetry for the past 13 years. It is interesting to see the journey of my life played out on the pages of old books.

13. I raised my nephew from the age of 12. He will be graduating from high school this year.

14. I have been a Girl Scout since I was 6 years old. I have earned my silver award and gold award. Girl Scout camp, Kittamaqund, was the single most influential thing that happened in my childhood. Without the people that I met there, I doubt that I would have made it through my teenage years.

15. I am a staunch supporter of syringe exchange programs. A friend and I briefly had a program up and running in Richmond, before threat of arrest caused us to shut down our outreach.

16. My dream job is to work at a residential rehab, obtain graduate certification through the Hazelden Foundation, and do part-time private practice with survivors of violent crime.

Finding peace...

2008-12-07T16:35:00.001-08:00

Our trip to Duke has been informative. It has forced me to begin to accept Michelle's diagnosis. We were surprised on her physical exam at the amount of atrophy that has already occured. I was also surprised that the doctor confirmed that Michelle is already experiencing "foot drop" and difficulty with tongue movement. These were two areas that we weren't sure of because all of the weakness/palsy had been located in her arms and hands.

We were encouraged by a few things. One, the doctor says that Michi has a slower progressing form of ALS. He said while he is never able to totally predict the progression pattern, Michelle has limb onset ALS at a young age. This seems to guarantee her 5 years. We're pulling for 20. They also have a ton of assistive technology that will allow her to continue to function and will even assist her in regaining some of the function that she has lost in her arms/hands. They're fitting her with braces and gave us clever tubing that will allow her to pick up a spoon/fork to feed herself a little easier. She has also found a ton of things in the assistive technology catalog that she wants. They range from hands-free hairdryers (she can't lift the hairdryer to dry her hair) to assistive kitchen tools that will allow her to continue to chop vegetables and cook.

Michelle and I have switched places with our level of acceptance on this issue. I thought that I had grown more comfortable with the idea of her living life with ALS. The confirmed diagnosis from Duke came like a punch in the stomach...one that I had a physical reaction too. There are selfish things about it. I can't picture living life without Michelle. I do not ever want to. I also have this overwhelming urge to surround her in a protective bubble. I want to protect her from disappointment, pain...and in this case, ALS. The reality is that I can't change anything for her. I can work with her to stay positive and share in her excitement about assistive tools that allow her to continue to do the things that she loves to do.

In the meantime I wrestle with the idea of ALS on a daily basis. Some days I'm more readily able to accept the diagnosis and what it means. Other days I live in complete denial. These days my prayers have changed to "please help me gain acceptance. I am a believer that everything in life happens with purpose. My wife is an incredibly strong, resourceful, inspiring woman. She is fighting to remain herself while adapting for the challenges that ALS brings her.

Now, with the doctor's blessing, we're shifting our focus to baby making. Our next fertility appointment is Thursday afternoon. Send positive thoughts our way. The OT folks at Duke are even providing "belly straps" that help support the weight of Michelle's increasing belly/baby to take the strain off of her back and legs. Its pretty damn impressive, really. I do not enter into this realm of pregnancy without hesitation. Selfishly I know that pregnancy for Michelle means 9-12 months of not being able to start medication that can stay the effects of ALS. It also means more pressure on her weakening body to carry a fetus. She is determined, however, to create, carry, and birth a child that continues her legacy after she is gone. Our baby, fondly named Syd, has occupied a space in our hearts for ages. It is a difficult struggle of emotion to celebrate the excitement of bringing our child into the world while wrestling with the effects that it may have on Michelle long-term. I realize, now, that the plans we have for having children will not change. Michelle refuses to let it. And our doctor is supportive. Women with ALS have babies. Its possible and it does not risk the fetus. I think that the joy that she finds in not having this innate ability removed from her because of the ALS is a feeling that I will never know. I do understand the sacrifice that she is making to do this. And I hope that one day our child will know how much his mother truly loved him...enough that she wouldn't let anything stand in the way of bringing him into the world. I admire my wife's strength and determination. I hope that, in addition to Michelle's beautiful blue eyes, Syd will get that sheer determination that has driven his mother to become one of the strongest women I know.

24 hours...

2008-11-30T09:59:00.001-08:00

In less than 24 hours we embark on the start of frequent visits to the ALS Treatment Center at Duke. For the past two months we have attempted to digest the news of Michelle's diagnosis and have attempted to find some peace with it. I think, for the most part, I have just put it away to the back of my head in an attempt to just pretend that it isn't happening. I haven't even made it past the 1st step in my grieving process. The reality is that I cannot fathom a day without my partner. From the moment that she entered my life I found a best friend, a comforter, a teacher, and a soul mate. Facing a future without her is often too much to think about.

As I sit here typing this, I am looking at the stockings hanging from the mantle in our living room. The first thought in my mind is picturing that mantle without her stocking. It makes me physically ill.

There are many moments to remind me that this diagnosis is not waiting for my acceptance. Michelle's hand stopped working yesterday as we were trying to hang ornaments on the Christmas tree. She has begun to trip more while walking, a sign of "foot drop," or the beginning stages of her legs beginning to stop working. I am overwhelmed with feelings of sadness and fear. I combine those feelings with feelings of determination and perseverance...I am determined to give her a full life, a happy life, and a life that changes as little as possible as her body begins to weaken and shut down. I spend my time putting into place ways to increase her mobility, adapt her lack of hand use to continue to work as a death investigator, explore new avenues to continue our travels (including a travel agency that specializes in making arrangements for folks who are wheel chair bound/vent dependent), and continue to live life...in spite of ALS.

I have been given a gift in finding Michelle. A gift that cannot be measured in experience or explained in words. It is a gift that I cherish every moment of every day. I try to quietly store away snap shots of our life together in my memory. Us standing in the living room of our first home together, dimly lit from the glow of our Christmas tree. Michelle laying on our kitchen counter-top, cussing the electrical system of our home as she installed under cabinet lighting. Hanging on to her legs for dear life as she climbed onto the railing of our front porch to hang Christmas lights on our roof - "let me do this," she exclaimed..."let me do this while I still can."

I'm not sure what tomorrow or the next day will look like. I work on pushing myself to find acceptance, but I know that this will only come with time. I am thankful for our treatment team at Duke...and the ability to hold out hope for a longer life...maybe even a cure. This Christmas I spend my time being nostalgic and incredibly thankful. My wife is a fighter. And every moment that I have her in my life is a moment that I am incredibly blessed. It is in that that I find comfort.

Gratitude

2008-11-05T21:40:00.000-08:00

I have had a hard time the past week. I haven't been looking for or finding gratitude for the amazing gifts that I have been given in my life. Quietly I have been focusing a lot on Michelle's diagnosis and my mounting fears. Being anal and controlling, I am always on top when it comes to being prepared for any situation. Being a social worker has given me amazing case management abilities and a growing gut instinct that tends to be very helpful. The catch with this, however, is that I can't plan. I have no idea how quickly or slowly this disease will progress and many services can't be accessed until you are in various stages (i.e - I can't have her insurance pay for a wheel chair and ramp to have waiting here for the day her legs stop working). I also can't plan like I know what the outcome of this will be for us. I have no idea what life will look like in 6 months, a year, 2 years. So, I'm forced to live in today. In the moment. Something that I struggle with on a daily basis. For those of you who are program oriented, you know that one of the basic principles of recovery is living one day at a time. There is also importance in having trust in a higher power, belief in a greater being than myself. Each day I am working to live in the moment and put trust in my HP's plan for us. For today, I am going to take time to do an exercise to let me remember all that I have to be thankful for.

GRATITUDE LIST

A - Annice, a person who helped me believe in the power and magic of life

B - Barney, for licks, cuddling, nice strolls, and loving me unconditionally

C - California, its amazing mountains, sprawling views, and for making me feel like, for the first time, my relationships and those I love are of value and importance

D- Drumming, the feeling of my hands as they hit the smooth surface of the skin head, the feeling of connectedness to the earth and the moment that I get from living in each beat

E- Eleanor, for making me come clean about my life and helping me believe that recovery is possible. For taking the shame away from my actions and pushing me to be as gentle with myself
as I am those I work with.

F- Father, the man who has stood by me, believed in me, celebrated with me, and held me during the toughest times. A man who inspired me to want to help others and give back some of the gifts I have been given.

G- Grief, something that I refused to accept for 12 years but have learned will bring me closer to her.

H - Health, something that I never understood the importance of. I live today alcohol/drug free, cancer free, and with a body that keeps giving so much, despite the crap that I put it through.

I - Ice cream, the way it feels in my mouth, its fantastic taste, and the fun and silliness that comes in sharing licks with my wife.

J - Joseph, a woman who has inspired me for years with her recovery, her sense of connectedness and her belief in my ability to live sober. For the nights she answered the phone at 2am, the afternoons she met for coffee in the Rat, and the days that she challenged me to commit to myself and sobriety.

K - Karen, someone that has watched me grow for 8 years. A woman who lives life with gratitude, pays forward every gift that she receives, and inspires me to seize each moment and live in it with an overwhelming humility that reminds me of exactly whose life I am living.

L- LeeRay, for believing in me and my ability to succeed. For pushing me to be more, do more, and give more and for challenging in ways that made me a better student, a better social worker, and a better person.

M - Marriage, the chance to make a lifelong commitment to a incredible woman and celebrate what it means to have true love

N - Nurses, the group of coworkers who taught me about objectivity in the pursuit of justice, patience with our system, belief that the truth does prevail, and for providing moments of undying laughter, sometimes at my expense - (Donna: "You have a patient. He has a bowel evisceration. His girlfriend stabbed him." Georgi: "Whats a bowel evisceration?" Donna: "You'll see." - then the ensuing laughter when I almost lost my cookies seeing the guys bowels hanging out of his stomach)

O - Obama, finally feeling PROUD of my country and HOPE for our future
P - Pumpkin, my wife, my rock, my inspiration and comic relief. A woman who I am blessed to be loved by.

Q - Quillin Drew, a woman who inspires me with her dedication to her beliefs and willingness to do whatever it takes for find justice for those whose voices are often unheard or overlooked. For her ability to ground me and for her unending belief in me, even during my darkest hours of addiction.

R - River, a place of solitude and beauty. A place whose banks I can walk along and feel connected to myself and the earth.

S - Social work, for the feeling of fulfillment that I get from working in the field and from the many, many benefits I have received from the clinicians who have helped me begin to find myself.

T- Tattoos, a wonderful way to celebrate life, mark important moments, celebrate my body and share art with the world

U - Unbirthdays - the day every year that I get to celebrate my sober rebirth

V - Veins, the fact that they're still here to provide a lifeline, despite my ability to blow them completely and my many years of abuse.

W - Waterfalls, for their overwhelming magnificence and beauty

X - Xylophone, for being the first instrument that I played as a child and the inspiration for a love of the piano that bred passion and a wonderful release through-out my life.

Y- Yesterday, the life that brought me to this moment with everything that I need to live life today.

Z - Zoos, the amazement and wonder I feel seeing animals I've only seen in books. The excitement that I experience and the feeling of being a child again, if only for an afternoon.

A New Era

2008-11-04T21:51:00.001-08:00

I have never experienced a sense of pride and joy like I did this evening when dispatch announced that McCain had conceded to Obama. It is the first time that I have felt PROUD to be an American and HOPEFUL about our future. I'm so excited to see the change that Obama brought to Illinois passed on to the rest of the US.

Michelle and I's marriage was overturned this evening in California (Proposition 8 won). We'll see what impending court battles have to say about whether or not marriages granted before the Proposition went into affect will be upheld. For now we say - FUCK EM! We're married, shared in the amazing feeling of having our relationship recognized, and have made the lifetime commitment to each other as partners.

Awesome work, folks. We're finally going to see our country start to heal.

PS - Here is a video of a brief news interview NBC did with Michelle and I regarding our marriage in California and the passing of Prop 8. We're still in shock that Richmond, Virginia did a positive piece on gay marriage. Ha!

2008-11-02T09:59:00.000-08:00

It has been just over a month since Michelle's diagnosis. Somehow it feels much longer than that! Our appointment with Duke is approaching quickly and I know that we will both feel happier when we're backed by an entire treatment team. Michelle and I have both been struggling with bouts of depression surrounding this news. I think that we are accepting it a little more each day...or learning how to convince ourselves that its not happening. Heh.

Take 2 with the fertility doctor is in a few weeks. We're both anxious to hear what she has to say. We still haven't figured out how to use the fertility monitor. Sometimes I wish that I had the necessary equipment to do this the old fashion way. Gross as it may sound, there isn't a lot of joy in telling your kid how they were conceived in a sterile doctors office under the watchful eye of nurses, a physician, and a geneticist. Maybe we're venturing into the "new generation" of baby making. We picked our "dad" out of a catalog.

With the cynical comments aside, we are excited about making arrangements for a munchkin in our house. We're thinking that we're going to hold out in Church Hill house until the summer. Its too difficult to try to sell right now. I'm busy trying to convince Michelle that she really wants to let me decorate the nursery in old John Lennon prints. She and her mom keep gravitating towards Elmo. Eh. We'll find a way to do both.

Our official wedding is just 4 months away. While we had our JOP ceremony in San Diego, we are planning a more formal affair in VA Beach for the first weekend of March. We have fallen behind with getting a lot of things done due to the ALS diagnosis. We still need to get the stuff set up for the string trio and hire the vintage limo. And we still need to deal with flowers. My folks surprisingly stated that they would like to pay for part of the reception. The thought of asking them for money for the wedding hadn't crossed our minds. We are both approaching our 30's and both do well for ourselves financially. It is a nice surprise, though, and one that we both appreciate.

Next week we're heading to NYC for a long weekend to celebrate Michelle's 28th Birthday. She has been itching to see a few shows that are on Broadway right now (Spamalot, anyone?). We're also going to give ice skating a shot in Rockefeller Plaza. We're both of the mind set that we need to enjoy every moment that we have together. I was originally scheduled to attend a board meeting in New Mexico that weekend but called it off so that I could be with Michelle.

So ALS is ever present but we're slowly trying to live our day to day. I tend to panic more than Michelle (or maybe show outwards signs more) as she continues to lose function. Yesterday she was unable to lift up her hand. It was the first time that I'd seen her lose complete function of all of her fingers and hand. It lasted for a short time and then functioning came back again. That is how she lost function before and then one day it just never came back. I try not to point it out or stress out. Sometimes that is easier said than done. But we keep moving forward. Each place that we visit we attempt to rethink our trip planning for Michelle's wheelchair. We're mostly pleasantly surprised at what we find. We'll still be able to do the zoo and the plane. And, as Michelle points out, we get bumped to the front of long lines because of the chair. *laughs* I guess it is important to find the silver lining.

Our Wedding Video

2008-10-26T17:37:00.001-07:00

What does it mean to live with terminal illness?

2008-10-25T18:18:00.000-07:00

I have a hard time defining what it means to live with a terminal illness. Our days and coping mechanisms are ever fluctuating. Today was quite amazing. We went to our first ever ALS Walk. One of the first people we saw was Libby...our aww inspiring symbol of strength, hope, and what it means to BEAT ALS. At 18 years post-diagnosis she is still walking, talking (though quite slurred), parenting, and living her life. She refuses to use assistive technology, so that means there is no wheelchair, no arm or leg braces, no feeding tube, and no computers doing the talking for her. She walked proudly today a mile of the 3 mile walk...leg dragging, arms hanging by her side, with a determine smile plastered on her face. As we neared the end of our first 1/2 mile, I touched her arm and, in my classic ability to be totally inappropriate, exclaimed "Libby, you kick ass!" She laughed quite a bit.

Libby gives Michelle and I hope. Hope that all of the people who give condolences like Michelle has already died will understand that it is possible to live with ALS. Hope that the OB/GYN that asked Michelle and I to consult with God and think about our morals when we decided to continue forward with trying to conceive a baby will understand that a mother with ALS is not a selfish example of us not putting our child's interest first. Hope that with the assistance of devices and a strong spirit, our dreams of sharing work with homicide victims in the field will be realized. Hope that this disease will allow my wife to watch our children grow and live to hold her grandchildren. Hope that Michelle will continue to believe in her own power. Hope that I will never have to know what it means to live a day without her beautiful smile, soft skin, and ever-present spirit. Hope that, in time, ALS will be a disease that we understand, treat and CURE.

I'm not always sure what it means to live these days. There are many evenings that it is hard to motivate myself out of the house to go to work. Leaving home means leaving Michelle and that often feels like time wasted. I do find that there are days that I live more on edge, am more grumpy at work, and feel less patience for listening to the problems of those around me. Suddenly my co-workers bitching about being overworked sends me into a frenzied session in my head - "You think things are tough for you?!" But then I try to challenge myself to realize that everything is relative. We are all dealing with our own personal issues and there is no comparison to be made. In truth I have been incredibly blessed by wonderful friends and family who have been supportive and present. They have rallied with support and encouragement that has made the past month easier to navigate.

I do still struggle on a daily basis with fear of losing my wife. Sometimes I can go two days without crying but inevitably it creeps in there. I sob, not a small whimper of crying, but full body heaving sobbing. It seems impossible to explain to an outsider, but when I met Michelle my life finally came full circle. I had spent years in relationships with people who were so focused on their own demons that they could not be partners. I had spent years and years taking care of people instead of living life. When I met Michelle I found a best-friend. Someone who shared common morals and interests, a passion for justice, a belief in the greater good, and a fiery spirit that took the world head on. I also found an individual who had suffered unimaginable trials, great losses, and had used them to make herself a stronger, more compassionate, dedicated human being. There was never any pressure for our friendship to be anything more than that. She was married and I had just left a long-term relationship. And then one day it changed. We both believe in fate and can't use any other word to describe our meeting, friendship, and emergent relationship. We finally did cross the boundary, her divorce being finalized and my ability to believe in love restored, we found a life of unity. Our goals were fostered by each other and our dreams have slowly been individually realized, bringing a sense of vigor and determination to the way that we approach life as a couple. The truth is that when I finally found Michelle I could not imagine there being a day where she would not be at my side. We would take on the world together - a more ethical, humanistic Bonnie and Clyde. *laughs* Does anyone have an image of superman's cape in their head right now?

ALS is a curve ball we had not anticipated. My sponsor continuously challenges me to live life in the moment. Even before Michelle's diagnosis, she reinforced daily that the only time that we have is the present. We can no sooner change the past than we can predict the future. With ALS, I find myself wishing to change the past and beleaguered to change the future. The reality is that I have the ability to do neither.

So today is lived in the moment. We are still relishing in the spirit of marriage - however heterosexist the institution itself is, we feel privileged, excited, and wonderfully hopeful about the future of our life together. We work to challenge our skills of creative cooking, struggling through the next week of being wonderfully broke and unable to afford the huge amounts of fresh produce and meats that normally fill our fridge. This, a sacrifice to make the trip to California and afford the co-payments and time off that ALS treatment requires. We are broke, but happy. And slowly we're realizing that money (saving for the "one day") matters much less than seizing the opportunity to explore, travel, and live life in today.

Facing Life.

2008-10-23T19:20:00.000-07:00

Its so strange these days. This morning my cell phone rang and I had back to back calls all morning. I travelled from the east end to southside and then to northside following up on CPS complaints and writing reports. It was any other day in our life. I kissed Michelle on the head and left her sleeping peacefully. When I got home this afternoon we split up a few things that had to be done around the house and she went outside to weed-eat the side yard. She came back in 10 minutes later, arms shaking, not even able to hold a glass of juice that I fixed her. A moment of reality. At 27 years old she can't hold items that weigh more than a couple of pounds. She certainly can't hold them longer than a minute without having severe fatigue. She got frustrated and sat down at the kitchen table. I told her it was ok and that we would just have to adapt to how we do things. No big deal.

There are all of these moments that happen through-out the day. Yesterday I was upstairs cleaning up our bedroom and going through my nightstand drawer. I looked up at our bed and had this image come to me of a day that Michelle wouldn't be on the other side of it. That was enough to send me into full-on crying. I sobbed while picking up our bedroom. Earlier in the day, after having an amazing lunch, visiting my grandma in the hospital, and playing around with my dad, we went by the bookstore to look around. Michelle had been eyeing a few books for Syd. They are these memoirs, if you will, where you can write all about yourself and give it to your children. Most of the books were for grandparents to give to their grandchildren...we had a hard time finding anything that was a legacy to be left to your own child after your death. It was slowly devestating as Michelle intently searched isle after isle of books trying to find something that would fit. I imagined her holding our beautiful child in her arms and then I imagined the day when she wouldn't be there anymore...it sent me into a bad mood.

I'm not sure what it looks like to live life these days. I came home from work and we spent the afternoon together. Michelle got ready for work and we ate dinner together before I took her in. Life just keeps going...but then there are many realities. It is unrealistic to be so terrified, but there are nights now where I wake up in the early morning hours and put my hand on her stomach to see if she is still breathing. I'm afraid to close my eyes for fear that she won't be there the next morning. The reality is that ALS can be a slow moving disease for Michelle. She does not have bulbular onset ALS (affecting the breathing and swallowing first) which means that, most likely, she won't be a person who doesn't make it to 18 months post-diagnosis.

We spend our days fluctuating between making long-term plans for our life and talking about the ways that we will have to adapt things as we go. Then we have times where the reality of death is ever present - where she talks about quitting work to live out her bucket list, where she urges me to be open to having in-home care for her because she wants me to have a life after she dies...today in the shower I told her to stop talking about it. I want to wipe her ass, give her a bath, cuddle in bed with her, hold her, live life with her for every minute that she is present on this earth...even if that means wiping the drool, giving medication through PEG tubes, adjusting vents, and managing paralysis.

Its just so fucking tough to do this. Most days I want to just pretend like nothing has changed and life is still life. I want to continue making plans for our wedding, her birthday trip to NY, renovations to the house. I want to talk about being 80, in a nursing home, and paying off the nursing staff to help us position ourselves so we can still have sex. Karen tells me to stay in today...that is what we have. Its true. I think part of me just wants to talk to other people who love someone living with this disease. I want someone to tell me after the grieving we'll move on and continue to live our lives. A friend, whose partner is dying of terminal cancer, told me that life will never be the same. She assured me that we would remember how to live again but that life would never be the same. She and her partner have made the best out of their lives, embracing every moment.

I think that I need to find some balance in this. Last night we had dinner out with friends, took silly photo booth pics, picked up ice cream from our favorite homemade ice cream place, and stopped by the hospital to visit another friend while she was working. We came home, watched Monty Python, and I whined about how much my IQ was dropping while Michelle was subjecting me to rediculous movies - it was us! Perfect. Full of laughter. Just us. I wish someone would hand me a magic wand and grant me the ability to accept without question, love with complete abandon, and plan for each moment as it comes.

An opening...

2008-10-23T18:31:00.000-07:00

It only makes sense to post Michelle's blog about our marriage as my first blog on this site. Just over a month ago my partner, Michelle, was diagnosed with ALS (commonly known in the US as Lou Gerigh's Disease). While the news was initially devestating and has continued to be tough to digest, we're beginning to learn to live our life again...often with fear of the unknown, but more, too, with celebration for all that we have been given. Time, however long or however brief, is something that we no longer take forgranted. Michelle posted this last night and it made me cry:

Last Friday, Georgi and I got married in beautiful San Diego, CA. It was something we had been planning for a few months. After the diagnosis, we thought seriously about canceling the trip. I had missed a lot of work and had no vacation time to compensate. We decided to just fuck it. Who cares? We may never have the chance again to get married, so why not?

The Tuesday before we left, we went with my mom to our first ALS support group meeting. I wish I could say it did a lot for me, but I was still at the stage where if you even look with slight pity or sorrow at me, I burst into tears. Even a "you're in my thoughts," sends me over the edge. I was still having trouble accepting any of this as really happening, and more than that, insisting that it must be a mistake and must be something else.To say I don't still think that a lot of the time would be a complete and utter lie.Everyone there was very nice, very inspirational in all their own rights, and all older than me. I couldn't concentrate on anyone talking about the latest drug they were on or whether or not to have a feeding tube or the lending closet of wheelchairs and ramps. I wanted to scream, "I DON'T BELONG HERE!" Yup. There's that denial again.

Georgi spoke a lot, asked a lot of questions. My mom did a little. We were given a lot of information and a lot of hugs. I also met Libby. The one person so far who has given me even an inkling of hope in all of this. She was diagnosed at my age. Now, 18 years later, she has had 2 kids since, still walks, drives, uses the computer, and eats what she wants. She can even talk still, although difficult to understand at times. Although obviously physically impaired, Libby personifies where I hope to be in 18 years. I spend my time either denying to myself that this is really happening, or sincerely hoping that I'm like Libby and have another 18 years of walking, talking, birthing, driving, typing, eating - living.

My divorce paperwork came in the day before we left. Finally. It had been in the works for months, but for some reason was being looked over in the circuit court. Yes. I was married. To a man. For about 5 years. We had started dating when I was 18, married at 21, before I had much time (or maturity) to evaluate what I wanted out of a partner or out of life. I grew up a lot in 5 years. And grew away.I met Georgi . I started an internship with the forensic team at my hospital, and she was the forensic social worker. Initially, she thought I was a preppie little nurse and was irritated to have me there. I was in amazement that this social worker had a mohawk and tattoos. We quickly grew on each other, though, and quickly developed a friendship. Unbeknownst to each other, we were both dealing with our own demons.

We went to dinner one night after she changed jobs and my internship was over. We spent the evening talking about things that I had never been able to talk freely about with another human being. I instantly began to feel a connection with her. From that night on, she was on my mind a large portion of everyday. I thought about how she was doing, what she was doing, when we could hang out together again, and mostly if she was thinking any of the same.We continued to spend time together, in quite unconventional ways at times. Bingo at her work, the ER while she received IV fluids after being sick, an ice fight in her kitchen, and photobooth pictures while her girlfriend at the time stood by, skeptical.

If you had asked either of us at the time if something was going on, we each would have said absolutely not. But it wasn't enough to realistically convince any outsider looking in.Then one night I almost lost her. I never had her, but I almost lost her. To even think about it now sends chills throughout and makes my eyes well up. I can remember speeding through the Fan, through downtown, into Church Hill, wondering what I would do without her. How would I go on? Who would I talk to? Who would make me smile? I was going through so much and who would be left to be that person I could turn to to say it was going to be ok and to just breath. Just breath. And the sheer ridiculousness of it all hit me. I'd only known her on a portion of that on a level that could be deemed as a good friendship. But I felt such a driving connection to her that I couldn't shake. Like near her was where I was meant to be, near her I felt whole. And here she was - almost gone.We spent the next couple of weeks laying out all the cards. She knew all of my demons, I knew all of hers. And at 4am one January morning, everything changed - for the better. I'll never watch Saved by the Bell the same way again.

We bought a beautiful house, discussed starting a family, traveled pretty extensively on a tight budget, each changed jobs, and last Friday, got married. We've had more than our share of ups and downs and stress that often feels never-ending. Our time in San Diego could not be described, in the same way that my feelings for her cannot be measured. I can't imagine a day without having her there to come back to. No matter what happens in a day, as long as she's there at the end of it, my life is complete.