Since I’ve been writing about my life with Multiple Sclerosis, I’ve covered a wide range of topics. Many of those will typically include pieces that discuss, not necessarily a specific symptom, but the changes and emotions I (or others) encounter because of living with MS. While symptoms like pain, fatigue, and cognitive function are extremely difficult to live with on their own, the collective effect that the disease has had on my life is sometimes the most difficult to deal with. One of these unfortunate effects that I struggle with, often on a daily basis, is trying to find my purpose in life.
Questions purpose in lifeWhile not everyone with MS is on disability or forced to leave their career, there are many that are in just that situation. No longer able to work full time, struggling to fill their days. Additionally, many people may still work, but their bodies allow for little more than that. They are still making a living, but perpetually paying the MS Tax for it, leaving them with a tired life of only work. Whether the disease takes your livelihood or your social life, or both, it can create feelings of unfulfillment and lead us to question our purpose in this life. What’s a life when I’m not contributing and making a difference? What’s a life, if all it is is work?
Identity crisisLosing my career to MS has still been one of the hardest things I’ve had to deal with. It is a constant struggle and source of depression for me. Anyone that thinks that someone like me doesn’t want to work has never been in this situation. Are there people out there that don’t want to work? Sure. But for the most part, people that are pushed onto disability hate it. Aside from considerably less money, it can leave you feeling disgraced, isolated, and lonely. There are many people that were brought up like me, with a strong work ethic, who are disgusted that we aren’t able to work.
Your job isn’t just a jobI spent a large part of my life preparing for my career and then working hard to excel in it. From grade school, through high school, college, and internships (I was fortunate enough to go to some very good schools, that had significant cost, first for my parents and then me, along with loads of professional experiences, all of that seems almost wasted now, particularly with chronic cognitive and memory issues). Then, starting at the bottom and working my way up. It was my life, and I loved it. All for it to be gone, almost over night. It’s created a real identity crisis for me. Who am I, if I’m not “Devin, the software engineer”? Yes, working isn’t the sum of our life, my career wasn’t all that identified me, but it was a pretty significant part of it. Your job isn’t just a job, it also helps you afford your lifestyle, it fosters friendships, and it’s integral to your entire life. When it’s gone, a lot of other things go with it.
What am I doing?It’s been several years now since I could no longer work in the career I spent my life preparing for, and I still find myself asking, “What am I doing?”. Perhaps it’s particularly rough because I am single and have no children, no legacy. Just me and my awesome dog. I think if I had some sort of family of my own, I could tell myself (as many of you should), well, my job is to keep going and being as healthy as I can for my family. That my presence is important to people, and that alone is enough. Having a chronic illness, is, no doubt, a full time job for many, particularly as it progresses. That’s a lot harder to think though, when you are in my situation, still fairly young and unattached. No job, no family of my own, not much to do each day (and not being able to do much each day). Really, what am I doing?
Life isn’t overI don’t say that for pity, I say it because I know there are others out there, just like me, thinking the exact same thing. What purpose do we have now? That’s a serious question and I don’t have all the answers, not ones I’d like anyway. I do like to think that everything I’ve gone through has prepared me for something. I know I’m tougher than I once was and I’ve learned more about life in my time fighting this disease than I ever did in all of those years of schooling and professional experiences. I know I appreciate life a lot more now. So I’m working on finding that purpose, that’s what I’m doing now. I may not have a clear answer yet, but I’m on the journey, working at it, and you can be too. Life isn’t over when our disease takes a lot from us, we simply have to survive, learn from it, adapt, and figure out what’s next. That’s what I’m doing.
Thanks for reading!