If this has been posted, then my fight against ALS has ended, and I am finally at peace. I tried to give brief glimpses into what I was going through, but kept most of it to myself. It is a battle not only fought by the body, but the mind. I tried to keep my spirits up and not make people feel sorry for me, but I know at times I was unsuccessful.
I hope I have left a good and lasting impression on my children. But I am afraid they will only remember a dying man in a wheelchair with a fancy computer. My youngest will probably have no memories of a healthy me by the time she has grown up. My wife has been abused by this disease nearly as much as me. I only hope that she can find peace and happiness on the other side of this. She deserves it so much. She has put me on her back and carried me to the finish line.
I have been trying to prepare for this day as the disease progressed. It was extremely difficult to do. But I knew I was only an electrical short or a bout of pneumonia away from not being able to. Most of us try to leave a mark on this world as we make our way through it. Some leave their mark in history books, their acts are so great. I do not know what kind of a mark I've left. Certainly nothing for the history books. I guess I was known as a nice guy, a bit of a smart-ass. I tried to enjoy life as it presented itself to me. Didn't necessarily grab it by the horns but I danced with it a bit. I made more mistakes and bad decisions than I care to admit. I wish I could go back and redo quite a few things.
I was however lucky enough to find the love of my life and share 3 wonderful children with her. I think those were my greatest accomplishments. I can't help but feel I've let them down. I'll never know if I stuck around too long, became too big a burden.
I hope by watching, as I was devastated by this disease, will somehow help the people around me. Possibly a bit of perspective or empathy for others. Empathy couldn't hug my kids or dance with my wife though.
I tried to keep my sense of humor and love of life throughout this ordeal. But as time passed, I felt it was an act. A way to put others at ease and make them feel I was the same Curt I used to be. Some days my thoughts consumed my entire being and talking was the last thing I wanted to do. My friends and family kept me involved in life and entertained.
Everything in my life was seen from a new perspective. I was now an observer and not a participant. I think this was the hardest part. I am not sure how my kids see me now. As a fighter, a hanger on, a father??? It's hard to keep fighting when you keep losing every battle. It starts getting harder to find things to look forward to every day. I wish I had longer, so much more I would like to do, say, places I'd like to go.
If anything can be learned from my experience with this disease, it is to live your life to the fullest. Don't take advantage of the small things in life. The smallest details of everyday are actually the ones you remember most. All the things you sometimes don't find the time to do. Tucking the kids into bed, playing kickball or hide n seek, going to events at your kids school, telling your wife how much you appreciate her, hugs, a good juicy burger, keeping in touch with friends , and enjoying life itself. I lost all these things gradually over time but it feels as though they were taken away in an instant. I wish I could do it all over again, but better.
In the end all I was left with was words. I tried to pour them out on pages to clear my mind and let those around me know what they meant to me. I was told by many that my ramblings made a difference. In the future, I hope you can remember me with a smile on your face and a little laughter in your heart. Feel free to pull my kids aside when you see them and tell them exaggerated stories about me. I love you all and thanks for being a part of my life. It was a shorter ride than I would've liked, but it was fast, had lots of curves and loopty loops. I'm not sure exactly what lies around the bend for me, but I sure hope they serve burgers and fries.
God Bless and someone please find a cure.
Curtis Eugene Luttig
May 25, 1968 - February 13, 2012
Posted: 2-5-12
Great movie you've never heard of but should see. Tucker and Dale vs Evil. Sometimes there is no deeper meaning or explanation for things that happen. There is simply evil in the world. It comes in many guises. It is not welcome but sneaks in the back when your not looking. It feeds on fear and ignorance. ALS is just one of the many forms of evil. Our only defense is to not let it change us for the worse. To rise above it. Some people think that God has a plan for me and that's why I got ALS. We happen to think that is bulls@#+. If you do not want to offend my wife, don't say anything like that to her. God is in the fight against evil. He didn't give it to me, but rather he is what's behind all of you supporting us. The good changes it has made in some peoples lives. He has given me all the support I need to try and fight this disease. I also believe he will be there for me at the end, to welcome me to a better place. Evil is definitely winning the fight of ALS, but good isn't giving up. It's winning a few battles here and there. There is good and bad with the slow demise of ALS. the bad is obvious and I've written about it before. The good is translucent. You can't see it unless you're looking for it. it's a little different for each person, some it doesn't affect at all. Hopefully in the end the good will outweigh the bad. That's all we can hope for. So if you learn anything from ALS, I would hope that it be, don't take advantage of what you have, cherish it everyday. And don't sweat the small stuff.
Never Give Up and Cure F@\£*ng ALS,
Curt
Posted: 2-2-12
Hey Kirby, your turn. ALS has impacted my children tremendously. How do you think it has impacted your children?
ALS has impacted my children in several ways. One way it has impacted my son Rune and my daughters Kate and Kennedy is that they have realized a little bit about empathy. Rune has seen me wipe back a few tears on occasion on some of our car rides to hockey practice. He will say "thinking about Curt, aren't you?" I say "yup". I see him developing a greater understanding of what friendship really means too. Christmas Eve at church this year I could not stop thinking about Curt and his family and had a tough time keeping my composure. My kids knew what was up and knew I prefer not to be asked if I am alright. It's exciting watching Rune, Kate and Kennedy form friendships. They are more aware of what friends do for each other. I often talk of the things that Curt, Eric, Cindy, Cheryl, and others have done together such as playing tennis, toilet papering, trips to Crystal Lake, and the more recent activities over the last two years such as the golf outings and barn parties at Cindy's to watch Spartan Football or the night Eric lost his Iphone in Dedyne's front yard from toilet papering the night before. Did I just say that out loud? We also did not put the forks in Tori's front yard that night either. My kids know Eric made a DVD of that night for Curt. It was pretty fun going back into Kroger to buy toilet paper as a 43 year old. It was pretty fun watching the kids run through the neighborhoods of good old St. Johns. My kids know about the time Curt came up to our house in Ludington back in 1996 or 1997 to do electrical work in our new home throughout our basement. They know Curt would not take any money so I had to sneak some cash in his duffle bag hoping he would find it when he arrived back home. They know that after we won U.S. Open tickets at the first golf outing, Curt was looking out for me and letting me know that Rune and I could stay at his sisters house out in Maryland. Thats Curt! Late in the evening and with all the activities going on and he is worrying about where I am gonna stay. My kids are learning its all about relationships, isn't it? Thats what friends do.
Did you have an understanding about ALS before this happened?
My understanding of ALS was very limited before I got a call from Eric a little over two years ago informing me of Curt's situation. My knowledge of this disease was limited to Lou Gerhig and his speech as he addressed the crowd at Yankee Stadium. I did not even know of anyone else that was going through this ALS ordeal. Isn't it so true that you never truly understand or develop an appreciation of something until it becomes personal. It's kind of like when you become a parent for the first time, now you really have a better understanding of what it means to be a responsible adult. When an issue becomes more personal I think through that appreciation of the disease and all the obstacles that we see people go through we come to be more charitable for causes as well.
How has your opinion of me changed over the past 2 years?
My opinion of Curt has not changed over the past 2 years. Being a close friend since I think 6th grade I feel I have a little insight to the type of person Curt is and what he represents. I did know of his writing talents. Having an English class with Curt and working on vocabulary words was very educational for me. We used to have to develop a sentence by using each of the vocabulary words in class back in the day. Why I can remember this is beyond me, but I knew Curt had a gift for the English language when he put together this sentence using the word innuendo. "I threw a ball innuendo, may I have it back?" I already mentioned of the story of Curt helping me find a place to stay and doing the electrical work in my home. He has always been a giver! Leslie knew what she was doing when she picked Curt. All of you in the St. Johns area know how giving of his time he is to his children. When wasn't Curt involved in his children's activities? Curt has laid a great foundation that will withstand all the hurdles life has ahead for his children. I am impressed and amazed by his handling of this crazy situation, but really shouldn't be. What you see in his posts is Curt. His insightful thoughts can be a lesson to us all on how to be a good person and parent. Curt as always known what is important and events such as these just emphasize the value in identifying what is truly important in our lives. If I were to open up the dictionary and look for the definition to the following words there would also be a picture of Curt. Responsible. In every sense of the word Curt is responsible and always has been. He knows the importance of being a good father, husband, and friend. He is a man of patients and integrity and always has been. Effort. Curt defines effort in all he does. Simply put though, any man who can build his own house and run a business knows what great effort truly is. How can you not respect that? Curt's battle and the way he competes with ALS exemplifies this to this day. Self Control. I think it is human nature to be greedy in many facets of our lives. Let your imagination run and you tell me from your experiences with Curt and how he has defined self control in the experiences you have shared with Curt as a friend, or family member, or from maybe a youth sport setting as a coach, or as a college friend and his actions in those settings. Today you see his poise and control in his postings. Others would not handle this situation as gracefully as Curt. He has not changed. Perseverance. Come on, do I really even need to say more on that? Leadership. Good leaders empower others, lead by example, and sometimes take the road less traveled. Curt was not a follower in high school. Look at the way he dressed. People laugh at my cut off sweats from back in the day, but come on, I remember Curt wearing cut off addidas sweats (the white shiny kind) that were cut to look like what I think are called Capris now:) The man would eat ice cream with a fork. Who does that? I think he did get that from his dad. Seriously though, Curt marched to the beat of his drum. He did not follow others that would take him down the wrong path. He has not changed. He still says what needs to be said. His children know right from wrong. Compassion. This too is evident in his posts. Its everywhere. During our maybe once a month phone calls over the last 19 years or so, he would always ask about my kids and Beth. He would listen to me many years ago on my late night Taco Bell runs when I could not sleep. I would call around 1130pm on Wednesday nights. Those were the nights before our big JV Football games when I first started coaching up in Ludington. Today, I know Curt is concerned for his kids. But his compassion has always been there for his own kids just like it is today. Thats one reason why his beautiful children are equipped to handle life's hurdles. Teamwork. As a friend, coach, family member, and employer, Curt knows all about teamwork. I watched him lead the mighty redwings into battle on many Friday nights back in the day as he lead the basketball team as a point guard and Eric got fed popcorn from some little kid at the end of the bench. Good thing coach Haske never found out. Where was I? In the stands. At least Eric made the team. I had the fortunate opportunity to play tennis with him as well as he lead Eric and myself on lunch bag raids of some of the upper classmen during our tennis meets. Today on my visits it's amazing to see how he and the kids get along and work together as a family. Conversations are just like ours. Most of the times the kids listen, but not always:) Curt, you asked how as my opinion of you changed over the last two years. Well, it has not. You have been, are, and always will be a great role model for us all to follow. You are a great human being!
Love you, Kirby
Posted: 2-2-12
Last week one of Sadye's classmates told her that they should raise money to try and help find a cure for ALS. Sadye embraced the idea and made a decorated jar that night to collect the money in. Mrs. Munger, their teacher, sent home a letter to parents explaining how the kids were going to do extra work around the house to earn money to help find a cure for ALS. The money will go to ALS Guardian Angels. This is a video created for Sadye's class to meet me and see some of the equipment Sadye has been talking about to her class. Here is the video for Mrs. Munger's 3rd grade class:
Posted: 2-1-12
Sometimes I wonder if this really happening to me. It only takes a second to realize it has. A simple glance down at my emaciated legs. Once they were strong, able to carry me about. Now they hang loosely on my body like a dead branch that hangs loosely from a tree, unable to sprout leaves or bear fruit. Thinking back I don't know how I ever made it to where I am. Slowly losing all my bodily functions. Bit by bit. Before being diagnosed I remember seeing small muscle twitches around my eyes. Unbeknownst to me these were a harbinger if worse things to come. I knew somehow that something was terribly wrong. I kept this sense of dread to myself and let the doctors try and figure it out. When my voice started going, I just smiled and told everyone it was food allergies. I remember seeing a look of dread in my friends when I tried passing this lie off as fact and not fiction. Eventually when I had to reveal my deep kept secret, it didn't seem real. I felt like I was reading lines from a play. How are you supposed to explain to your children that you will begin to dwindle in front of them until there is nothing left? I don't know, but I did it. How do you let your wife give up any semblance of a normal life and stay home to wipe drool off your chin and empty your urine bag. I don't know, but I did it. How do you let your children help get you into bed? I don't know, but I've done that also. Humility is a thing of the past. ALS is pretty sneaky at at taking away the intangibles as well as the obvious. I guess along the way I was able to take the setbacks because there was always something left. Now I have nothing left to lose. I have my eyes and brain. Reality has begun to set in a little more now. I wasn't sure where this post was going. But here we are. Hopefully I will have a clearer train of thought next time.
Never Give Up and Cure F@\£*ng ALS,
Curt
Posted: 1-28-12
Hey Cindy, care to give a friend's perspective? What is best and worst thing about my getting ALS? to u personally.
Not sure when dealing with ALS there is such a thing as a "best thing". Sad to say, it took Curt getting diagnosed for me to make it a priority to spend time with my friend. I always think I have more time; or "next week" life will slow down and I can squeeze more in... but we all know that doesn't happen. As a result of the diagnosis, I somehow talked Leslie into training a couple of people so she would be able to run errands once a week. Eric and I were the first 2 volunteers besides Curt's family. All I can say is "Poor Curt". Over the past 2 years he has been great with us being his caregivers while Leslie is out. Imagine being connected to all these machines and having a PE teacher and a computer guy in charge of "caring" for you! Thank goodness that Curt's mind is always sharper then ours. We have "accidentally" tripped over cords; bumped eye gaze out of focus; made him hold his breath longer because we are slower at suctioning then Leslie; pushed the wrong button; charged the wrong battery and drank a lot of coffee! Bless Curt's heart, he is always patient with Eric and I and talks us through whatever "crisis" may come up. If it hadn't been for ALS, I wouldn't have made it a priority to hang out with Curt and Eric once a week. I can't tell you the great times we have had. There has been a lot of laughter and sometimes tears. These visits have been the greatest therapy for me. I get upset when people comment on how nice it is that I have visited once a week; truth be told, I am a selfish person and have gotten way more out of our visits then Curt has. He is one of my best friends; I look forward to our Tuesdays together. Another positive is what I have learned from Curt. I truly believe I am a better person for knowing Curt.
The worst part of ALS is watching someone you love deteriorate every week. I feel like I have been slowly grieving over the past 2 years. I do focus on living and having fun but ALS is always there. It's like knowing you will be hit by a truck and you have seen it coming for 2 years but you also know you can't get get out of the way. It will hit you and gets closer every day. There are too many negatives to list; and like Curt, I don't want to focus on them. Even though I am not the one who has the disease, it will always be a part of me and has changed me. I had NO IDEA how far the horribleness of ALS could reach into different areas of life.
What things do you now know about me that u didn't know 2 years ago when I was diagnosed?
I really didn't know Curt could write. I am not sure when or how this talent evolved but I can tell you that Mrs. Markman from 9th grade English would be proud! I also didn't know, truly, how wise Curt is. I don't think he still understands how many peoples' lives he has touched and changed for the better. I had no idea how much I could learn from my best friend. I know I see him in a wheel chair every time but all it takes is to hear his comments and you realize his “spirit” is the same as 1986. Curt has taught me to slow down and enjoy life. Take time to spend with friends and laugh. Keep family close and ENJOY them. Play with your kids. Don’t give up. Life is all choices. You can choose your attitude. Don’t sweat the little stuff. Don’t let other people get the best of you- forgive… don’t hold grudges… Sometimes when we talk; I feel like we are 16 again; other times I feel like we are 90. Curt may be in a wheel chair but he is by far, the strongest man I know.
Oh yeah, I also didn't know how many girls "desired" Eric, Rich and Curt back in the day. Sometimes as we visit and laugh, we will look at the old SJ yearbook. Let's just say, I am keeping a mental list of "these supposed girls" and will be asking them at our next class reunion!
What would have you done differently than what I have done on this battle with ALS?
I don't know what I would have done or how I would have handled it. I can only hope that I would come close to Curt's resilience and bravery. I honestly am amazed with the fight Curt has each and every day. He has adapted to every hurdle that has been flung his way. I think about how we use to communicate with his Droid phone through texting, next was sitting around his computer and he would control the mouse/type with his feet, followed by pointing at letters on a piece of paper with his foot and last but not least the eye gaze. He has had SO MANY hurdles... I get the phrase "Life is not fair". I can't tell you how many times Curt has comforted me; tells me how lucky he is and helps me keep my attitude positive. How backwards is that? I have shared Curt's website with my Health classes and his fight with ALS. Words cannot describe how proud I am of Curt and his family and how they continue to battle and live with this devastating disease. Nothing I write to all of you will ever come close to conveying my love and level of respect for Curt.
Posted: 1-19-12
Who am I?? I think a few years ago I would have made a list that would be identical to my list now of things I've lost. I believe most of you would have as well. Quick with a smile, loved playing sports, loved the outdoors, played and coached with his kids, loved to eat, always seen with a Mt. Dew, loved going to the cottage, liked to help others, and loved going to MSU games. All these are gone. My smile is hidden behind a mask of indifference. The only game I can play with kids is connect four on my computer. I can and have gone to MSU games, but it is not the same. Like eating a styrofoam apple. It looks like an apple but sure doesn't taste like one. surprisingly not eating is a huge obstacle to overcome. I think about it always. Doesn't help that everything in the world revolves around food. Holidays, parties, get togethers, tv commercials. College basketball is sponsored by Reese's for &@#+*$ sake. It doesn't bother me to have people eat around me, it is mostly when I'm alone with my thoughts. It is a fleeting image that floats in the back of my mind and makes an appearance at indiscriminate times of the day. Favorite places aren't seen in the same light. As this disease has progressed, all these things have slipped away. An outer layer that has been shed. Unlike the beautiful butterfly that emerges from its chrysalis, I emerged as a much thinner, immobile version of myself. If it weren't for family, friends, and even strangers sending me emails and visiting I would have a pretty poor image of myself. As it Is I still have a hard time seeing myself in a positive light. Being totally dependent on others has a way of sapping your strength. I guess there is a little more to me than I thought. With all the superficial aspects of me stripped away, there still something left worthwhile. A little surprising. I am left with only my words words to express myself. A way to exercise my demons. Tell others how I feel about them. Give some insight to others about what the view is like from the edge. Sometimes when you are at your lowest, you are able to see things in a different light, from a new perspective. Like a Phoenix you rise from the ashes with a new outlook on life, a better understanding. I will not get that chance. Hopefully some of my ramblings will allow others to see their lives a little differently. Not take the little things for granted and live life to its fullest. That would give my life with ALS a little meaning.
Never Give Up and Cure F@\£*ng ALS,
Curt
Posted: 1-12-12
Before ALS
My biggest concerns
Were paying the bills
More or less
So much to do
So little time
Couldn't wait to sit down
Take a break from the grind
So now here I sit
Day after day
Life rolls by outside my window
I look outside and watch my children play
I wish I had done more
Eaten more, loved more, lived more
Perspective is a bitch
when your feet can't touch the floor
I stand at a precipice
Looking down
Never imagined I'd be here
Not sure what to do now
Helpless
That word sums up how I feel
Can't take care of my family
For now they take care of me
When I am gone
Can I see my children from above
Will my kids remember me
And remember our bond of love
Hopefully they will remember the good times
All the great moments we shared
All the lessons I tried to teach them
By example and trying to be fair
And lastly my wife
Whom I leave all behind
To raise them and remind them
Who I was at one time
I will try to send messages
From wherever I am
Hopefully they will reach them
And help them from within
It may not seem fair, it may not seem right
But this was the path I was given
And I've put up a fight
Posted: 1-09-12
Some people in the past have asked what the daily routine for ''Curt with ALS'' was. I received another request for it so I guess I might as well pull away the curtain and give you a backstage tour. I think the reason I never did it before was because I was embarrassed or did not want people feeling sorry for me. In the beginning I was able to take care of the numerous things I needed on my own, as I grew sicker the responsibilities have shifted onto Leslie. As it stands now, all the responsibility unfortunately falls on Leslie, as I am completely immobile.
The day usually starts when I wake up at either 3 or 5 a.m. I am not sure why my brain seems to have these preset times set. Occasionally I will sleep through until 6 or so. Nobody else is awake so I am pretty much on my own. on some occasions my eye gaze computer has locked up, so I just lie there and think. Plenty of things to think about these days. If it's not locked, I can read a book on my Kindle app, surf the web and read newspapers, email people, write updates, watch a movie on netflix, etc. Eventually the house begins to awaken and Les (who gets up at 6:15 am) will come in and disconnect my food from my peg tube and using a syringe, inject water and medication into my peg tube. Since I have been laying in the same position for 10 hours or so, she will adjust my arms and legs if necessary. While Les is getting kids motivated to go to school, I do more reading or writing.
Somewhere between 8:00 and 9 (or sooner, because it depends how the day is going as things are never the same), Les will start getting me ready to get up. She will suction my mouth and trache if necessary and push the cart with my suction machine and and misc supplies out into the living room. She gets a sheet on my wheelchair and brings it into bedroom. The eyegaze is disconnected and brought out into living room. Les brings the trixie lift into bedroom and readies all the cleaning supplies. She cleans my front half, then rolls me and cleans the back half. Before rolling me back, she puts the harness underneath me that hooks to the trixie lift to hoist me out of bed. After rolling me back, she puts in my mouthguard (keeps me from biting tongue) and puts on my neck brace. The trixie lift rolls into position and the harness snaps to it. It is electric and lifts me up out of bed, similar to a stork carrying a baby wrapped in a blanket hanging from its bill. Now, Leslie performs an act best described as juggling 3 balls in the air while hopping on one foot. She rolls the trixie lift out from the bed and using her other arm, rolls the stand holding my ventilator machine all towards the wheelchair. When we get to the wheelchair, the fun really starts. This is no exaggeration, she uses one arm to tip the trixie lift forward sitting me in the wheelchair, the other hand runs the remote to lower me, and balancing on one leg, she uses her foot to push my legs out of the way. Once this is accomplished, she puts the trixie lift aside and takes off my neck guard, removes mouth guard, turns on wheelchair vent, turns off bedroom vent, and positions me in wheelchair and slides the harness out from beneath me. She then pulls all the sheets etc. off the bed, takes out garbage, pushes vent and trixie lift out of the way. Now she rolls 400 lb. wheelchair and I out into living room. When we get there she puts a pillow under my legs, adjusts arms and head, and sets up the eyegaze on the wheelchair and plugs everything in. I then get more water and medicine and the food machine is hooked up. Next up, Leslie cleans and changes my trache and gives suction again of my mouth and trache. I then get eye drops and my eyes cleaned out. At this point I'm all set. Some days Leslie will wash my hair or shave me. Then Leslie has to clean machines, do laundry, make the bed for night. By this time it's 11 or so and she will try to shower and eat lunch. Then, about 7 or 8 at night, we repeat the whole process in reverse with one or more of the kids helping. I have left out a few steps and simplified some steps, but I think you can see who most of the work falls on. ALS sucks, not only for the person who has it but for the caregiver also. In my case Leslie has become accountant, supplier, nurse, mother, wife, friend, troubleshooter, diagnostician, dietician, housewife etc. Depending on the day there are varying levels of cursing and swearing involved. I am extremely fortunate to have her in my life.
This post started out as a simple example of my day, but has obviously turned out to be something more. That's because f#&+ing ALS isn't a simple disease. It affects more people than just those afflicted. And I am one of the lucky ones, there are many who have no support. So when you see someone in my situation, don't just pray for them. Look beside or behind them and pray for them too.
