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A Moment of Reflection

As I get older, I find I’ve developed the habit of reflecting on my life with Multiple Sclerosis a couple of times a year. One day is obviously my MSiversary. The other, today, is my birthday. As I write this, I am turning 42 years old, with nearly half of that spent having MS myself, and the other half spent living with a grandfather who suffered from the illness (I guess you could say that the disease has been a pretty big part of my life). Moments of reflection can be tough. It’s extremely easy to think about what’s been taken, what you haven’t done, and what might have been. While I’m never one to shy away from talking about those types of thoughts, I take days like this to think about the more positive aspects of life with this disease. This time around, I thought I’d share some of those thoughts with you fine folks.

Appreciation

I’ve mentioned in previous writings how I feel my disease has made me more appreciative. I think it takes having things taken from you, as this disease can do, before you can truly begin to appreciate the life you have. The simplest things are much more enjoyable after living with this illness for so long, especially after having it affect everything from my ability to make a living to every relationship I’ve ever had. When you have enough rough days in life, you begin to look at things differently. The smallest of life’s moments, like a cool breeze, a good night’s sleep, a cold beer, your team winning, and even, as cliche as it sounds, a good sunset, can be moments of profound enjoyment and appreciation. I’m pretty sure I wouldn’t feel that way had this disease not become a big part of my life.

Invincibility

While it may not seem it to most people, I stop and look at what I’ve gone through because of my chronic illness and I have to admit, it makes me feel a bit invincible. Sure, I have a lot of bad times and have lost a lot, this isn’t the life I planned, but I’ve kept on going. There’s a great quote from one of the Rocky movies (yeah, I grew up near Philadelphia, so Rocky is a treasure) that I always think of: “It ain’t about how hard you hit. It’s about how hard you can get hit and keep moving forward; how much you can take and keep moving forward. That’s how winning is done”. I take that quote to heart. It doesn’t matter how many times I fall, or relapse, or something bad happens, I deal with it and keep moving. I have a perfect track record when it comes to life hitting me hard and me getting back to it. When I think about that, I feel pretty indestructible. I’ve already overcome a lot, and because of that, I know I can overcome more if needed.

The best a man can be

It’s impossible to know how I would have turned out without MS. However, I believe that with the disease teaching me to appreciate life more (and at a young age) and forcing me to overcome a tremendous amount of setbacks in life, that it’s made me the best person I can be. I learned a lot of tough lessons over my life with MS and was forced to learn them sooner than most. I may not appear as successful on paper as I was when I still had my career, but I do think that I’m a greater and more well-rounded person than I was when I still worked. It certainly doesn’t always feel that way, but deep down, I know it’s the truth. In many ways, I’ve accomplished more after I left my career than when I was in it. Living a life with MS is no joke, it’s not easy, and surviving with it is an accomplishment. Always remember that when you are feeling down.

Thanks so much for reading and always feel free to share!

Devin

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Comments

  • dirtclod
    2 weeks ago

    Thanks Devin for your thoughtful response.
    I think we (with MS) all do the best we can to survive and live our lives.
    I felt encouraged by your article because I think it made me feel a little less lonely. Sometimes it seems as though you’re the only passenger on that roller coaster.
    Thanks again

  • CTLH
    2 weeks ago

    Devin, you are wise beyond your years. Thank you, again. Well done.

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much @CTLH , very much appreciated!

  • dirtclod
    2 weeks ago

    I identify with this article so much but it reminds me that I’m unhappy with myself.
    I, also reflect (too much) and consider that which I’ve lost and gained from my experience with MS. I hope that I’ve become a little wiser, more considerate, and more appreciative of the profound pleasures of each day of existence – and yet these very deductions are a product of a slightly impaired mind that has been cognitively stricken by disease. Everything I think or do is filtered through the veil of my affliction.
    My attempts to surmise my successes, accomplishments, and achievements are only as true as I’m willing to believe them to be. I have tried to make an honest comparison between my abilities before I had MS and after and in every facet of intellectual and physical function I would have to admit that I have probably declined a bit in the performance of each. Common sense tells me this is most likely also true in my evaluation of my decline . Oh my gosh, where does this circular thinking get me?
    I,I, me, me, firstly – I’m pretty sure no one cares about this thinking nor should they. I am caught using questionable insight to consider my past and future to no one’s benefit including my own. In the end it makes me feel selfish and small and I want to be a better person than that. My circular thinking has come round to why this article makes me unhappy with myself.
    I think too much about me and I don’t know how to make anything better for others. For those of us dealing with MS, how does one become an example of the proper way to be of value to one’s self and others?
    As I write this I’m reminded that so many have it worse than myself and my conjectures are exactly as I complain about – somewhat self absorbed thinking.
    Interestingly, I fully appreciate the words and the sharing of the article that spawned this. Maybe it’s because it’s once removed and not really about me.

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much for sharing that @dirtclod. I’ll say this, while I wrote this article, I was certainly feeling pretty good about things, but that doesn’t mean I always feel that way. Sure, I know that I have a better appreciation, but there are still so many moments where I cling to what was and what could have been, moments where I’m a wreck. Life is a roller coaster, but life with MS is one of those extreme roller coasters with bigger drops and multiple loops. There are constant highs and lows. I’d venture to say that many people (myself included) have the same circular thoughts and doubts that you do. The best way to to be helpful to others for folks in our situation, is to just do the best you can, to survive, and live your life. Those that get to know you, will draw from that, and you should as well. Just surviving and doing your best with this disease is a major accomplishment, one to be proud of. Surviving and doing your best with this illness doesn’t mean you won’t have bad moments, it doesn’t mean you won’t have doubts, if it did, it wouldn’t be much of an accomplishment, would it? So at the end of the day, as corny as it might sound, I think just being the best you, that you can be, is the best way to make a difference.

  • brewlabs
    2 weeks ago

    Reflection and Perspective have given me great strength and comfort about MS and its place in my life.

    My father, who was a passenger in a horrific automobile crash, had his life turned completely upside down, and has been physically crippled ever since – but don’t tell him that! Pop, now 86, has been living this way for nearly 50 years, and he considers himself a very lucky man – because his primary value was always his family.

    Because of my Pop, I have always felt that any complaining on my part is not living up to the high bar that he set for dealing with difficulty with fortitude and class.

    Bottom line is that although we have no control over our MS (or other conditions) we certainly are empowered in how we deal with it. I think for many of us, building our lives in the face of MS, gives one the ability to be more appreciative, proactive, retrospective, and efficient with our days.

    Every decision we make and action we take, we grow because we get a life lesson of some sort (good, bad, everything in-between). But the decisions we do not make (or refuse to make) and when we do not take action – then we open ourselves to regret. And regrets are hard for everyone to overcome.

    Honest reflection can be very enlightening if approached head-on. So I keep accepting challenges, even creating them at times because Confidence comes from Achievements and Achievements only come from Challenges. And MS, well, MS is a challenge, and every success in the face of it is an Achievement.

    Great post as always!

  • Devin Garlit moderator author
    2 weeks ago

    Thank you @brewlabs, your Pop sounds like an amazing role model!

  • asapcynthia
    2 weeks ago

    Hi Devin, if it gives you any comfort I will always be 18 years older than you, but I find myself in a serious state of reflection lately. I’m 60 and finally feel like I can look back on how things went down, and I actually am surprised how good it all worked out. I look at it and say wow, I did all that. Yeah I did, and my only regret is living in the shadow of ms, if that makes any sense. Like a pot on the back burner, I lived in fear of ms bubbling over. I thought I if put in as much I as I could when I felt good, that would balance out when I felt bad. Maybe it did, but I wish now I didn’t give it so much, that I spent more time in the moment, rather be three steps ahead all the time. ms will always be there, but your kids won’t. So don’t put your hope all in one bucket. Spread it around.

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much @asapcynthia!!!

  • TurnerLJ24
    2 weeks ago

    Devin,
    Happy be-lated birthday. Reading your post is just what I needed–thank you. Sometimes, I feel like I’ve been “robbed” of some of the things I used to do, like running, hiking, skiing, etc. Like you, this disease has changed my life, and not all for the worse. I’m an educator and currently in a position to educate young adults (18+). The first thing I bring up is “the elephant in the room”. I walk with a cane (and sometimes with a walker) and I make it known that I have MS, what my limitations are, and that it’s okay to ask questions. The lesson I try to impart on them is to not jump to conclusions about someone’s disability. “Speak to the person, not the wheelchair”. I do my best to remain positive, but I sometimes need a “shot in the arm” like you provided. Thank you.

  • Devin Garlit moderator author
    2 weeks ago

    Thank you @TurnerLJ24, so happy to hear that you are making a difference!

  • Legsonstrike
    2 weeks ago

    This was very well thought out and written! You are so good with words and I’m like you, it will take alot to take me down!! Several times I have relapse since 2012,too many to count and each time I thought I would never make it through but I DID!! it’s a very challenging disease from minute to minute, hour to hour, day to day. We never know what we will have to deal with at any given moment and that is what’s so frustrating to me because every time I feel good and think I can make plans, 9 out of 10 times I get knocked down but I always get back up! We have to keep fighting for a cure and keep fighting to live the best life possible and with support from friends and family and God we can do anything we put our minds to! If you ever tell me I can’t do something I will prove you wrong but I may never be able to do it again! Can’t say I didn’t try!!

  • Devin Garlit moderator author
    2 weeks ago

    Thanks so much @Legsonstrike , always very appreciated!

  • Lily
    3 weeks ago

    Happy Bday Devin!
    My MSiversary is today November 1st. 12 years. At times it seems like a minute, at other times, it seems like I’ve had it all my life, which is true, as there were symptoms long before my dx.
    Sure, it’s taken a lot away from me too, my career, my relationships.
    I understand that feeling, that deep down feeling of knowing so much more about life, knowing so much more about people.
    Keep on keeping on!

  • Devin Garlit moderator author
    2 weeks ago

    Thank you @Lily! I hope you MSiversary went well!!!

  • messeeone
    3 weeks ago

    Happy Birthday, Devin, from a fellow “Rocky” fan. That movie changed my life! Keep moving forward!

  • Devin Garlit moderator author
    3 weeks ago

    Thank you @messeeone! This was actually written a while back, but that you nonetheless!

  • Janus Galante moderator
    3 weeks ago

    Devin,
    a very happy birthday! (A day late!)
    I hope you were, or ARE going to do something awesome in celebration.
    After all you’ve been through, and with the countless number of articles you’ve helped us all with over time,
    I would say that you’ve accomplished a great deal!
    Many thanks!

  • Devin Garlit moderator author
    3 weeks ago

    Thanks so much @emmajean (Janus)!

    This was actually written a while back, but that you nonetheless!

  • SueK
    3 weeks ago

    Kudos to you Devon! It is so nice to read a positive prospective of life with MS. I have never viewed it as anything more than a bump in tree road. It shook me up at first, but life went on. I chose to live the best life as I can, adapting to the changes alone the way. It didn’t rob me of anything that wasn’t balanced by the gifts it gave me, most of all the chance to recreate myself. It saddens me to see how many live with a dark cloud hanging over their heads, frozen in time, looking back rather than forwards. I see it no differently than aging. You can’t fight it, so make the best of it every step of the way.

  • Devin Garlit moderator author
    3 weeks ago

    Thank you @SueK, while I certainly have a positive perspective, I never shy away from some of the realities of my life with the disease. For me, it has most definitely been much worse than aging. I’m sure many have even said I have a “dark cloud” over my head when that is simply not the case. Talking realistically about how an illness affects us is not being negative, it’s being realistic. I think we are currently in a world, particularly in the chronic illness community, that seems to prioritize positivity and happy thoughts at the expense of actually dealing with out issues. While it sounds like you’ve had a pretty mild course of MS, many have been much more impacted. Being open about the negative things that happen to them doesn’t make them negative people. The fact is, MS can be an extremely awful thing for a lot of people, but talking about that, particularly with others that experience the same issues can be extremely therapeutic. I say all of this because I write many articles about life with the disease that some people may see as being negative, but as you can see from this article, I’m actually far from negative about my life, but that doesn’t mean that I won’t talk about my many issues. For many, expressing their problems is helpful, sometimes simply seeing that someone else goes through the same issues as you can feel so incredibly good. It makes you feel like you’re not alone.

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