Yesterday was great. Really killed it at work and generally felt good. Today I’ve been some swamped and stressed that it seems like nothing is wrong. I’ve committed myself to taking time to write down my thoughts and plan to stick with it. What I’ve realized is that it’s a double edge sword. I start to think about wonderful memories and then I’m saddened by the obvious. I’m trying to train myself to life live and not to live for death. If one thing is for certain there is no certainty in life. God has a plan for all of us and that’s pretty much the bottom line. A car could have run me over Sunday in the church parking lot and I would have never had an awful Monday. The point is there is nothing concrete in life except for the past. I think the best thing I can do is focus on making more memories not just for myself but for my children and wife, but also remember the good times to perk myself up.
Today I remembered my engagement to my wife. I went through the moment for months trying to come up with a plan, we went ring shopping, and it became reality. The funny thing is that I spent months trying to think of a great way to do this and then frantically tried to cram it all into a few days. I setup a dinner for one of our favorite restaurants a few miles from the house, ordered a few dozen roses, and made a board that said “Will you marry me?”. We got in the car for dinner and I faked forgetting something in the house. Ran back upstairs and setup everything on our bed. Who knows what my wife thought I was doing for 5-10 minutes. We went to dinner which was wonderful but I thought I may have a heart attack for the entire meal.
Once venturing into the house my wife wanted to sit on the couch downstairs and relax. Are you kidding me woman? I’m trying to propose and this wonderful woman wants to cuddle up on the couch. Somehow, I got her upstairs and her face lit up. We sat downstairs for hours that night. Let me correct that statement. I sat downstairs while she opened a bottle of wine and called her family. I remember watching the joy in her face. I wouldn’t trade that moment of her happiness for anything. I couldn’t wait to marry that woman but I’ll save that memory for later.
An eternity in a day is all I can think. So many emotions usually flow through me. Depression, fear, tears, and anything else you can mix in. This morning I went to my first PT appointment to get fitted for a new AFO. I was greeted by a young woman who would be helping me out with a fitting. She went to shake my hand and I stood up to shake hers. She seemed to be in shock. She had read my file and had ordered a fitting for a wheel chair. She said “so you are walking?” like I crawled out of my death bed to get some new wheels.
We did some walking tests and she seemed pretty happy with my gait. I’m going to get fitted with a knee brace to stop hyperextending but she calmly asked if I’d like to start PT with her to work out. I obliged and thought to myself how lucky I really am. I have had drop foot which was attributed to a wakeboarding accident for over a year and I’m still walking. Although I’m not doing any jump rope or hop scotch I’m still upright and I just had an emotional swing. I could probably contribute part of my positive nature to the fact that I’ve actually slept lately, or that my torso fasciculation’s have calmed, or even the fact that I was loaded up on benzos. By the way if you have ALS and are depressed don’t think taking an anti-depressant makes you weak. It helps and that’s all that matters.
So in being so spry today I decided f**K this disease and f**k a death sentence……I’m going down swinging. Now I know most of this is denial but I don’t quit. I preach it to my children and to myself. Giving up is for wusses and the weak. I’ve been researching natural supplements that help with symptoms and while most of it is probably just mental I’m going to do everything I can to live healthier. I’ve set a chart of my supplements by suggested dosage, popped through amazon, and ordered a pill organizer. One thing I know in life is that if you aren’t organized you don’t stand a chance in being successful. Will any of this cure me?…..psh. Will any of this help me feel better?…possibly. But you don’t know until you try. So, the goal is to cut out the processed crap, eat right, and supplement my body’s needs. You are what you eat.
The real spark to all this happened last night. God bless my youngest son. He’s a sensitive young man who is beyond his years. My oldest son is experiencing teenage years which I get but my youngest loves his dad and has no problem spreading hugs and love. He came up to me and hugged me so hard I thought I might fall over. He knows something is wrong and he just wanted to tell me he loves me. So what should I do? Should I lay back and die? Should I give up and say F it? Not a chance. I tell my kids that we live as Burell’s and that means we don’t let anything hold us back. If any of this extends one more well lived day with my children then I’m going for it.
So today has been a good day. Scratch that…….today has been incredible. No breakdowns and nothing but positive coming from me. Granted its only 2:30 and there’s plenty of time to fall apart but I’m going to hold on the best I can and do as much as I can! I’ve always believed that God holds all the answers but empowers us to be the best person we can. He provides us our daily bread but he doesn’t pick the ingredients!
Amazing how life slows down to a creep. I didn’t sleep last night which isn’t outside of the norm. Over the last week my fasciculations had crept from just my bad leg to all over. My arms were twitching and so were my legs. Heck my butt was doing a dance I didn’t want it to. Thought about pouring myself a drink and drowning it out with a nice vodka on the rocks. I didn’t go there. I laid in bed and waited for my medicine to kick in. My fasciculations used to strike me as the nerve in my leg trying to heal. I always thought that was a positive thing and welcomed them. They were a sign of a possible future. My previous doctor had told me that was my nerve regenerating. Now all I could feel was my body signals ringing with no answer.
The anxiety was breaking me. A few tears came and my wife squeezed my hand. I could tell she was crying too. It’s unreal to realize that your body is slowly dying and letting you know. I don’t feel them when I’m up and moving but trying to sleep is my hell. The moment I lay down it all hits me. I can’t describe the feeling other than a small piece of hell. I got up to get a drink and noticed how over exaggerated my movements really are to compensate for the leg. I always wear my brace and I walk fairly normal. Without it I realized where I was. I was breaking down. I could see the future of not being able to move, of not being able to breath, and not being able to function. It made me want to scream, cry, and just freak out. I’ve turned into a flailing mess with little left leg control and I know this is the best I’ll ever be again.
I saw a movie last week and this man is facing a sentence of death. When asked if he was nervous he replies “Why, would it help?”. I’ve repeated that to myself over and over for a week trying to be a positive person. It just wasn’t there last night. It’s a strange feeling to know this is probably the best you will ever feel again but also know it’s probably the worst mentally. I’m sitting in my office and have made a plan to write here as much as possible. It’s not for the pity but maybe someone similar can take solace in the fact they aren’t alone. Maybe something I say later on will help someone else. Maybe one day my kids can read this later in life and know I wanted to be normal for them. I wanted to be the soccer dad, I wanted to play basketball with them, and I wanted to race bikes down the street. I wanted to be all of those things for you and while that doesn’t give you a normal childhood you can know I loved you more than anything. Maybe things get better and I can share that turning point with someone else. I really don’t know. Maybe I spend 15 minutes a day rambling and funneling incoherent thoughts out there for my own benefit.
The truth is right now I don’t cry for me. I’ve always been void of self-pity and emotion far beyond what could be deemed a flaw. I’ve always told my kids that “Burell’s don’t cry….we fix things”. I left work an hour ago because I couldn’t hold it together. My wife is the most wonderful person I’ve ever known and I could think about is what she’s going through.
We met years ago. I was a single dad with a case of workaholic. She was a single woman with a larger case of workaholic. We fed off of each other and we were one. Our first date was a lunch and I remember her picking nervously at a napkin. It was so cute but I didn’t know if things were going well or she just wanted to escape. We didn’t know each other before and I had cleverly lied about having something to do just in case. I wasn’t sure if she was uncomfortable so I proceeded with the escape plan. I remember getting in the car and smiling. She was so genuine and honest. I had been through so much and was scared. She taught me how to open up, how to be a better person, and how to accept love. She was my everything from there on.
I bring all these things up because I’m crying for her. She’s so strong and supports me regardless. She has backed me 100% through all of this and this isn’t the result she deserves. She tries to hold back the tears and the fear for me and I try to hold it back for her. The truth is I couldn’t trade spots with her. I couldn’t lose her the way she will eventually lose me. She signed up for a lifetime of dealing with my crap and I gave her 3 years of good and whatever is left of pain. We’ll make more memories but it just feels like a black hole right now.
I cry for the children because they have to live the life I did. God knows I could have kept a therapists bills paid for years. I didn’t know how to deal without a father and now I pray to God that they don’t inherit this genetic plague. Hunter and Garrett if you ever read this live your life to the fullest. Don’t be your father who focused on material processions and work. Focus on happiness and providing joy for others. I’m still considering options on how to communicate with them later in life but what do you say? What is the breaking point of leaving your child a note for 10 years down the road and letting them move on in life?
My wife called nana (my mother) to take the kids to school and we went to the doctor. Let’s see if the MRI turned up a compression. The PA came in and started running through the results. Well no kidding I had 2 small bulging discs with a flattened sack. I remember thinking Holy cow all this time I’ve just screwed up my back. Well she went on to say that wasn’t what was causing the issue and that my emg was much worse in my left leg than before. Well no crap Sherlock my back has issues. She then went on to say “I’m sorry its also progressing to your right leg and we are sending you to an ALS clinic”. My doctor wasn’t in yet and his PA looked like she was going to cry. I mean I’m sitting there with my wife and the PA is about to start balling. I look over and my wife is hurt. I was fine but my heart broke for her. I’ve always felt that God has a plan and you can’t change that plan. I’ve done a million things in my life that could have gotten me killed and had always been fine. I don’t ever cry and I don’t mean that I only tear up once in awhile. I mean I just don’t cry. I could smash my finger in a garage door and the worst you were getting out of me was some four letter words and some stomping but that day I broke. She didn’t deserve this and neither did my kids. Where was the fairness in punishing such a wonderful compassionate woman and two kids that have been such a blessing? Where was the fairness in any of it?
We embraced and my wife said “we’ll fight this”. I loved her for that. She didn’t say it for her she said it to protect me. She wanted me to feel better. I’ve seen this disease in action and it’s not about fight it’s about dealing. We were told that I showed nothing outside of lower motor problems and I didn’t seem to be progressing quickly which was good news and also left the door open for other MND’s that were quite as awful. Let’s not kid ourselves…….they all suck but none the less there was hope it was MMN or something else. We split ways in the parking lot and I went on to work as did she. Probably not how it should have been left but I wasn’t ready to break down and she was holding strong.
The rest of the day contained crappy phone calls from and to family. I spent the last year and half+ being irritated with family members being overly worried. I had told people to drop the subject and that I would be running circles around them shortly. Turns out I now had to tell these people the possible future that I wasn’t going to be here. I may die in a year or I may live ten years. How do you tell people that? How do you call your mother and tell her that she may lose another person in her life to a disease so awful? My poor wife had signed up for me to take care of her and now I was looking down the barrel of a complete crap show of a life. I spoke to my ex-wife and let her know my status. Just wanted to get a plan for helping the kids.
I’ve always read that people go through denial with a diagnosis like this. I wasn’t in that realm. I had made my peace previously and my faith is strong. Either that or I was so in denial that I had just thought I accepted it. With every phone I heard someone cry. I didn’t want people to cry and it just broke me further. I didn’t want to answer the questions I had no answers to. I didn’t want to really talk about it but it wasn’t fair for my loved ones not to know. At this point I don’t have a full blow diagnosis and am going for another opinion on what is going on but none of the options sounded super.
Like everyone these days we are obsessed with finding solutions on the internet. Oh you have a hangover? I bet theres a cure on the internet! Oh you have a cramp if you neck? The internet says you should eat a banana before bed. I became obsessed with my leg since I saw no real improvement. Hours of web searching told me I had a compressed nerve. Yea that’s it and I need to see a new doctor. I made an appointment and off we went again. Here comes the barrage of tests again. Lets talk 14 gallons of your blood, throw some electricity through you, and stab you 100 times in an emg. By the way my least favorite test ever. I mean we can’t figure out a better way to measure these things than shoving a needle into your body 100 times until you feel like a pin cushion. I was getting dressed from the EMG and my doctor mentioned my last name sounded familiar.
He had seen my father years and years before at Duke and that’s when it got real. I hadn’t put ALS in my mind. The doctor thought I may have a compression in my back or MMN or a slew of other things. The panic was back again. But hold on a second Cory you’ve been through this. You had a doctor tell you no to ALS before. Let’s just chill out. Not sure you’ve ever heard of the Eiffel tower idea. Basically you can’t stop yourself from thinking about the Eiffel tower if you say it. Well I was there but my tower was a mountain of medical issues. Dear God please don’t me have a MND or anything serious. I had no upper motor issues and I began scowering endlessly to find other options. At this point I couldn’t sleep without a sleep aid and my only escape was work. I love my family so much but when you are worried about the future it just helped to work. Let’s just focus on the career. You’ve spent 10+ years trying to get to where you are at and things are going well. There was another week left until my follow up appointment and I was shot. I could read an article online and think I was fine and read another article and think I was dying. To be honest by the end of it I convinced myself I was fine.
The sleepless nights had taken a toll on me and that weekend I crashed. I didn’t sleep for 8 hours. I went to be at 7pm and woke up at 2pm the next day. To make matters worse I fell pretty hard on Sunday morning and felt like I ripped my thigh muscle. When you don’t have any muscle you don’t pick which way you fall you just cover your head and hope nothing breaks. I was hurt but I felt a calmness around me. We packed up to go to church. The topic of the day was Ephesians and how to pray. Quite frankly I missed being in a more traditional church but my wife loved the more modern guitar and signing realm of churches. This service hit me pretty hard. Pastor David talked about how we really need to talk to God and that was our conduit to our relationship with God.
I’ve always kept my prayers fairly selfish. I had prayed for the ability to walk normal again, prayed for my children’s safety, and so on. I always felt that the Lord had bigger things to solve than my petty issues. I wasn’t the type to pray for a job interview or a passing grade. I felt that God gave us the power to deal with out own issues and that was the strength he blessed us with. I mean entire cities are being leveled in the middle east and I should pray for the ability to run? Just wasn’t my MO. I did pray that night. I prayed for strength to deal with whatever was coming and power for my family. It finally clicked to me that God had plans but it was ok to talk to him about them and without that communication we really weren’t letting God into our souls.
I’m not sure where to start. It all started for me a year plus ago with a wakeboarding accident. Fell pretty hard and came to with a sore ankle and knee. At the time I thought I had just hurt myself in a normal fashion. Weeks went by with no improvement and I visited the doctor. That doctor referred me another doctor which ended up referring me to a neurologist as my foot had turned into drop foot. Some preliminary tests were done including an EMG. Lucky for me the system was slow and I spent months waiting for a confirmation thinking I had a pinched nerve. The day came and was told that I severely injured by nerve at the knee. Panic set in but was told that within a few years there was a great chance that my foot drop would disappear. I asked about ALS after the emg and nerve conduction and was told a nice loud “Not a chance in the world!”. A sigh of relief came over me and I did everything but hug the doctor. The worry was gone. Told myself to take it easy, work the muscles, and one day I would be back to myself. I’ve never been someone so different. I spent my days doing yardwork, going out on the boat, and spent almost every night doing an hour on the elliptical. I was trying to be an active person but the leg limited me.
It’s amazing what happens to someone when they see themselves change. I went from doing yardwork for 8 hours a day to struggling up the stairs. What it did do is bring on a realization that things wouldn’t always be wild and open for me. Began to think about the future. We started life insurance policies, setting up a dollar here and there for the kid’s college fund, and saving for retirement. My mind went from new boats and toys to looking and where my 401k was. I felt like a better person but lacked the things that made me happy. My favorite thing in the world was my wife and myself riding to nowhere on the boat. There was no plan and there was no destination. The wind was in our hair, nothing but smiles, and we felt like we had conquered the world. My wife wasn’t just riding on this adventure but instead was my co-captain in life. If she smiled than I smiled, if she was sad I was sad, and if she was mad………it was probably my fault.
Over the next few months I became less active and was angry. I wasn’t angry at anyone but angry at who I had become. I was angry I couldn’t run up the stairs or play tag with the kids. I was counting days. It had been close to 18 mo and dang it I wanted my leg back. I wanted to teach those kids a lesson on who was the tag champion. I wanted to play soccer with the kids and I wanted to be the things my father couldn’t be for me.
When I was young my father was diagnosed with ALS. To be honest I didn’t take advantage of the time with him and I’ve always resented myself for that. I didn’t understand what was going on and I was selfish. I didn’t want to see him sick and I thought it would all be ok. I avoided it as much as I could. I still swear I blocked out most of the memories. I remember him being in the hospital and I didn’t want to go. His was my hero and I would see him when I got out. I remember being told it was time to say goodbye and I remember the anger. I was so young that I really didn’t understand. I didn’t realize until later in life that my fear of commitment and investing in people was most likely rooted in that loss. I treated a lot of people poorly to not be too connected. A lot of those people I’ve apologized to and a lot I haven’t. It’s funny how the looming end of your mortality makes you more mortal. If we all just treated every day like it could be our last. I don’t mean that in daring death by skydiving or being a daredevil. I mean by being the person you need to be every day. Those are the regrets I have in life.
I am a 33 year old married man with 2 wonderful children who was recently diagnosed with MND. This is merely an outlet of feelings, thoughts, and a journal of my every day life.