Day 77: I’m back

 

I haven’t posted in a while. It’s been a pretty wild couple of weeks. I’ve written but not felt like sharing. So many things have been going through my mind and so many events have taken place.

I was hoping to have my next post be about starting a clinical trial. Everything was ready to go but it appears I have some liver issues right now. Heading to a GI this week to hopefully see some improvement but things got a bit scary last week with my ALT & AST levels going up over 500% in the last month. Just hoping it’s because of an adverse effect to the riluzole but regardless I’ve been taken out of eligibility of trials until I get within normal. Not going to lie it really knocked me down but I feel like it’s God’s plan and I just need to see where he is pointing me.

Thursday, we went to an ALS Jazz concert and while I was having a bad day it ended great. It was our dateaversary. Not sure that’s a word but 5 years before we met at a restaurant in Durham for our first date. We ended the night at the same restaurant. While my health is weak our love is stronger than ever. We’ve been through a lot in the last year and my wife is my rock. Without her I have no idea what I would do.

Then there was the talk of finally talking to my kids about the ALS. I vaguely remember that exact conversation with my father. I never really processed it and not sure the children really did either but they took it very well. Everyone in the house has a fighting attitude and I couldn’t ask for more. We all cried, we all hugged, and then the next day we had the ALS walk in Raleigh.

To be honest I dreaded the walk. Not because I don’t want to support the cause or others but because I hate feeling exposed or weak. We had a wonderful turnout and to the eyeball it appeared there were about 5000 people in attendance. Our team probably had 50 walkers some of which I knew and some of which I met for the first time. The outpouring of hope and positive attitudes were incredible. We made it probably 80% of the walk which is farther than I thought I’d ever make it. Somedays a trip to the mailbox seems daunting so doing a  1.5 mile plus walk up and down hills after 2 hours of standing felt great in a painful way. I think I wanted to prove to myself a lot and I felt good about it. Today however I feel like I could stab myself in the legs and feel better. I used to hate leg day when I was healthy and today is like that times 1000.

Regardless the event raised over $400,000 and our team pulled in a nice haul of over $14,000. I left this blog last time in a rather terrible mood and hoping I can get through these challenges and get a refresh. Seeing all my family together this weekend was definately a great start to that.

Day 57: Who Knows

 

I hate the barrage of questions that comes with this disease. The uncertainty can eat you alive. The waves of symptoms, the wondering if you are doing the right things, and the constant unknown clock that is ticking. It’s like I live in a world of borrowed time and have no idea what to do.

I spend so much time trying to figure out how to save myself, how to buy one more day, and how to survive for the possibility of a cure. For a long time, it was easy to ignore what was happening. I thought it would all be better one day and at the worst I would be without one working leg. Now I find myself obsessed with what is going next and how fast it’s going. Between the supplements, an eating schedule, a pill schedule, and the spasms/fasciculation’s it is a never-ending reminder that the clock is ticking.

Most days I can handle it but the last 2-3 weeks have been awful. My energy is down and when I try to distract myself with getting out in the yard or working on something I find myself more down by the fact that I can’t do something. I just put up a post about the cans and cants of my life but sometimes the cant’s weigh you down to a point where you feel like you are drowning.

Sometimes I dream about being normal and I don’t want to wake up. There’s a lot of things I’ve learned from dying but how to die isn’t one of them if that makes any sense. You can train yourself to be a better person and you can lean on your faith but how do you truly grasp the fact that its most likely going to happen?

Hope has always been my saving grace. I had hope that my symptoms were just celiac and heck last week I had myself convinced that b6 toxicity from years of energy drinks maybe a culprit but memories of my dying father just drag me back into it. Ironically, I pulled up the stages of dying.

  1. Denial- Been there done that.
  2. Anger- I didn’t really have that phase but I think I got my anger out for this disease over the last 20 years.
  3. Bargaining- Yea I’m not going to lie I’ve tried it. I’ve prayed and pleaded with God to spare me. Not sure if that one worked yet but I’ll let you know in 5+ years if I’m still alive.
  4. Depression- Think I just fell face first into that one.
  5. Acceptance- It’s going to be ok.

Oddly I think I had both some denial and acceptance early. I always try to see through things and grab the reality and I still know I can’t control it. The depression is like a sledgehammer though. I’m not writing this for sympathy but maybe someone reads this who has someone struggling in one way or another.

I’ve never really been depressed. I’ve usually mocked depression because you see it in so many situations that are controllable. This is one of the first things in my life I can’t control that obviously has the ability to end my life. So, what do you do when you have no idea how much time you have? If I knew that I was dying tomorrow I would know exactly what to do. Maybe the key is to treat life that way? That would work out fantastic if life didn’t need to be planned. It would work out even better if things like bills and work weren’t involved. It’s so morbid to think about. I was just about to order football tickets for the upcoming season and I have no idea if I’ll be standing. Things were so much better two months ago, when all I had was a bum leg and couldn’t see past that extent of my sickness.

Maybe this is all a senseless rant and I’ll feel better tomorrow. Maybe I need to force that. Heck maybe I just need to double down on an anti-depressant and relax. All I know is it’s a wall I need to climb just like any other barrier in life. I’ve been dying since I was born someone just pointed it out for me. Mortality is an awful thing to grasp and I think that’s why I’d appreciate another 40 years to grasp it a bit better. Maybe I’ll back up to bargaining again and see if I can swing that one by the big man.