Lessons and Insights

I actually think the way I look at life in general has improved since having MS. I think I’m more patient. I think I’m more compassionate, because I was not a compassionate person. It’s like you should be able to do this. I can do it. You should be able to do it. But I think what I have realized is, whether it’s physical, mental, emotional, whatever, is a lot of people have a problem they’re dealing with. You don’t know what that problem is. You don’t know how they’re feeling. But you know they have a problem, and you can feel compassion because you know what it’s like to have a problem, not that specific one. So, you can be more compassionate, more understanding. I think having to slow down gives you a much different perspective on what’s important.

I have a new definition of resilience, which I used to call perhaps like a quality that someone may have, the quality of being resilient. But now I think of it more as a skill to be resilient. And sometimes it doesn't work. I know that now. And that's fine. So, it says nothing of me if there's a time where I can't be, because I know when I was down, even when I consider myself as having a good resilience skill, I was not able to use it. I was unable to use it. And it was a time I needed help. And that is just something I never thought about before.  And now I have help. I have professional help. I have friends. I have a circle that starts with me, surrounding me. And I have all these layers, or layers and layers of people. And they're all closer and closer to me. I call them, they call me. I talk to them, they talk to me. It's completely different way of living from whatever I had before.  It makes me so happy, because I am in the middle. And I am number one. And I have a beautiful, two-year-old daughter. I have a wonderful, beautiful wife. I have a six-year-old daughter. I have all that. And still, I'm the precious one. And I'm OK to say that on national TV.

It's made me not take things for granted, like walking and thinking and swallowing and seeing. I have regrets that I wasted a lot of time on stupid stuff. And I have regrets that I wallowed in depression for so many years, and I was wasting precious time that I could have been moving. I could have been walking. I could have been going places. I could have-- instead of just sitting at home and being sad. I wake up-- I'm grateful every day for the abilities that I have because I know people that are way worse off than I am, people that are bedridden, people who can no longer speak, people who are end stage MS, and a couple have been psychotic. So, I'm grateful that I have what I have. 

And just realizing that your value or your worth is not based on what you can or cannot do-- it is based on the person that you are. So maybe I can't run this race and do those things that I wanted to, but there are so many other things that I can do.  And I think that I have a lot of opportunity, because of the MS. I'm fortunate to have been able to do those different studies and to help in that respect. I have met some phenomenal people that I would not have met otherwise and different contacts. I hope that I've been able to help other people deal with their MS. And I know that I have gained so much information from other people across the board, whether, you know, like I said, visiting the people in the nursing house that had MS-- that was big. That was a huge thing to just sit and talk with everybody to get their perspective, because they had all been living with it for so many years. So, it does change your perspective. I have changed in a way that I usually focus on tasks and getting the work done. This is what I have to do in a day. And I want to get 15 things off of this list done. Now, I'm happy to do two things off the list.  

So it's given me appreciation for what I can do, when I can do it. It's forced me to be in a state of grace about what I am grateful for, even at this very moment where I am suffering. And I'm afraid to walk too much or run. Because I am weak, but-- I'm afraid it's going to cause the pain to flare again. I'm scared. Because I don't want that to happen again. I only have half an oxycodone. I don't have anything help me, given that nothing helped. So yeah, constant gratitude, not false. I hate false. Oh, be positive. I’m like no, I'm not going to be positive. There's nothing to be positive about this. That's silly. But I do have gratitude, and that's a very different framework, I believe. I think people get them conflated. But I'm grateful that I'm not in pain right now. I'm grateful that I've been able to talk this long with you to share my experience. I'm even grateful for this happening because it's given more levity to my own understanding of what this disease means, what disability means to me. It is-- it would be-- I feel like still in denial that I have a disability, but I'm experiencing it, and that's very strange. So, it's given me a deeper-- more opportunities to have a deeper understanding of the nature of life. 

That's one of the things that in my reframing I think has changed a lot. I think that you can never really predict what's going to happen to you in life, and me being diagnosed with MS is a perfect example of that, and I think you have to deal with the curve balls that life throws your way. And for me, MS was a big curve ball, but it kind of has made me focus on the things that I do have control over and the things that I don't.  So, I have control over a lot of elements of my life. I have control over the way that I approach my disease. I have control over whether I'm going to go to see my neurologist every six months and whether I'm going to take the medications that they prescribe to me and whether I'm going to take the vitamin D and if I can exercise. Those are things that I can directly control, and it's comforting to know that some of those things will hopefully lead to positive outcomes in my life, and so I keep doing them.

I don't spend my days worrying. A lot of people talk about that, how you worry every day about what tomorrow is going to bring and stuff. I-- I don't elect to live my life in fear. I'm not going to worry about that. I just do what I can you know-- every day."  
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I've figured out ways to manage what I do, and I don't think about it at all anymore. I don't think of, oh, this is going to be hard, because you know it's been hard for you know half a dozen years or more. It's like, why worry about it twice a day, every day you know? At this point, that's just how things are, and I just do my best and move on. I don't worry about it too much. 

I don't think about myself as bad. But I used to think-- I don't think of myself as-- I don't know, I don't think too bad about it. At first, maybe a year ago, I was thinking like, oh, how am I going to make it through. But now, after learning and living through a little more-- I'm on two years now-- I just feel like I can move forward. I'm going stronger. So, I'm getting through it even better and stronger. So, I'm a lot better than I was a year ago. So, I do feel much better. I don't feel bad about myself. I do worry, like I said, about my eyes. I do worry about that sometimes. But I just take it-- just go ahead and go. I don't let it stop me anymore. I don't just sit in the house anymore. I do try to just move and go do things, just take it one day at a time.  

Ain't no miracles out there, drugs, religion, or otherwise. That's the reality of it. We've got to somehow figure out how to live with it. A lot of anger at first. And then you get past that stage. And then you get past that stage and you get to the realization that it's the way it's going to be. Then you learn to deal with it. It's never fun, but you just learn. You get used to it. You get around it. Deal with it. It is what it is, isn't it?