Been Thinking About My Past Before MS

So first of all, the other day I sprained/twisted my wrist. Not sure that there was really an “event” that did it, it was more like a series of events. First, I think I slept on it weird so I started my day off with it kind of hurting. Later I was using a heavy battery-powered drill to put something up in my bathroom when my wrist just “gave out” but I didn’t lose my grip of the drill so my hand just sort of “fell limp” meaning the heavy drill in my hand sort of yanked at my wrist. This is when it really started to hurt but I still didn’t think it was that bad so I did not ice it right away but then I went to see a movie with my Dad and the entire time I was messing with my wrist (it was bugging me) and by the time I got back it was hurting so bad! So I wrapped it up (with one of those stretch band things) and went to bed thinking it would be fine by morning but nope, it hurt even worse. So I started the whole icing thing, used a splint to keep it immobilized and alternated between that and the wrap. It has been a few days and it is not as bad (I can kind of type now) but it still hurts when I move it too much so I am still wearing that splint. Fun…

Now, let’s talk about what has been on my mind for a while. My past. The other day I talked about all the mental issues I am having (like anxiety, stress and troubles with my own identity) but one thing that I did not mention was what really set it all off. Yeah, my MS-health situation is what started it all off after it began getting worse a couple years ago but for the most part I was able to “manage it” until the other week I heard a song that reminded me of a specific event in my life prior to my MS. It made me think of a specific night at Disneyland (California Adventure in particular) with my (at the time) girlfriend. That song sparked such a vivid memory…

They were trying to pull off a sort of PG-Disney-rave kind of thing. They were playing music really loud (beat-beat-beat) and there was a parade going on in the distance with giant floats that had dancing people on them. Everything was covered in bright colors illuminated by neon lights so there was a sort of glow to it all. I remember rushing through the crowd while holding my girlfriend’s hand and running up and down steps to try to cut around all the people. I remember how dark and clear the night sky was behind the giant ferris wheel and Mickey Mouse roller coaster which were both covered in colorful lights; if the power went out I imagine it would almost be pitch black! The summer air was cool, cool enough that some people were wearing sweaters but not me, even before MS I didn’t care for the heat and instead preferred the cold. In that chilly air was the heavy smell of the different restaurants and food stands around us. What really stands out to me is how I was able to move so quickly across large distances of uneven ground while I was completely unassisted. No cane, just me and my own two legs. I did not feel dizzy and I did not feel exhausted despite how late it was. I was not constantly worried about where the nearest bathroom was and I was not all jumpy from all the sounds nor did the large crowds of people around me stress me out and/or make me feel claustrophobic. I felt healthy and I felt happy. I felt free.

This one memory caused a chain reaction of other memories from life before MS popping into my head and though I have always tried to not let myself think about my past I could not help it. I let myself look back and if all the mental issues I have been having were a tiny flame then looking back on my past was like tossing a bucket of gasoline on it. While I could manage the tiny flame I can’t seem to handle the massive chemical fire I’ve created. The more I try to contain it the more it seems to spread.

So now I can’t help but to think about it all; I miss all that, I want all that. I don’t mean actually doing those things I mean having the physical ability to do them. To feel “free”. Right now I feel like I am “trapped” by my MS, my life; I feel confined, bound, anchored, etc. I want that freedom again, I want to feel like I can breathe. I feel like I have spent the last few years “accepting” things and I am tired of it because I don’t accept this. I am not happy with this, I am not even content but it is hard because I don’t see a clear path out of this mess. I feel like I have exhausted all my options. I mean, I know I haven’t, I know there are still things I can try but I feel like pharmaceutical medications have done everything they can for me and now my only real hope of getting myself out of this ditch lies somewhere in the world of alternative medicine (like stem cells). You know what this feels like to me? It feels like when you are playing a game like chess; that moment where you realize you are going to lose so you frantically start to assess your options in hopes of finding a path to victory, a path to survival.

19 Responses to Been Thinking About My Past Before MS

  1. Jackie Richwine says:

    Matt,
    Your post are a lifeline for me. Your MS and roller coaster seem so parallel to mine. You are like my ghost writer because you can put to words my feelings. I read your post and it is like Wow. Who put my thoughts, feelings,&/or life in words/print. Thank you for the post and being open to sharing. It is encouraging me to start blog some day. Maybe sooner than later. I have a friend who has been begging me to start a blog.

    • Matt Allen G says:

      you really should, if anything it is a great way to vent, to “just get it out there” instead of keeping it bottled up and if someone says it helps them great but at THE LEAST you were able to get it off your chest. Plus it is a good way to keep track of how you are doing

  2. Joey says:

    Matt,
    Stem cells may only work for short time if at all. Quality of life of going thru stem cells? Google Oldenlandia affinis plant Dr Grubber has replied to my emails, also B Fragilis A polysaccharide PSA gut bacteria with MS.

  3. Dimitri says:

    Great post.
    I, too, try not to think about the past too much, because I’ll only fall into a downward death spiral.
    I read an article about a person with MS who had the stem cell treatment with chemotherapy. She talked about how for the first time in years so does not feel that constant dizziness.
    Damn, what I would not do to have my mind back.
    Unfortunately, we have to wait, but make no mistake about it a solution is coming.

    • Dimitri says:

      This article article just popped in on my Google Alert. We are at the point were science will be able to reverse the damage in our cns. Not just slow down the relapse rate. Something has got to give soon.

      http://www.bbc.com/news/uk-northern-ireland-39258041

      • Matt Allen G says:

        I saw this on Twitter the other day. Yeah, even STOPPING disease progression would not be enough (if you ask me) because there us still all that damage that is already done. You can pull all your troops out of a war zone but someone still needs to clean up before it is habitable again you know?

    • Matt Allen G says:

      I have heard so many good things and bad things about HSCT, but all DMTs have both good and bad things said about them, nothing is 100% perfect and I am not looking for 100% perfect, just “better”

  4. Desi M. says:

    Matt,
    Reading this brought tears to my eyes. You painted such a clear picture with so many emotions expressed. Thank you for being so transparent with your experiences and thoughts while living with your chronic illness. I too live with a chronic illness and can definitely relate to remembering the past and missing how different life was. I like to constantly remind myself to look at the glass half full and focus on the positive changes I’ve gained since, however this can be extremely difficult at times. Although you may feel helpless, I see you as an inspiration for being so brave and honest with sharing your experiences. You are so strong in my eyes and I feel you are helping many people through these blog posts by educating and relating to them. I hope you continue to stay strong, and find a silver lining during your lowest times. I’ll be sending positive energy your way.

  5. Mariah says:

    Hello Matt,
    Your post painted a very vivid picture for me. The story of your past is similar to the things I am fortunate enough to live today. I, myself am not short of health issues, but your story left me feeling grateful for the health and strength that I do have and the ability to experience and make such wonderful memories. As your journey has shown, you never know what life is going to throw at you. Thank you for reminding me to be thankful for each day and experience. As well as reminding me that you cannot dwell on the things of your past. We must live in the present moment and take whatever beauty out of it that we can.

    • Matt Allen G says:

      Yes, and we have to try to not take all the little things for granted… I can get so angry at myself sometimes when I think about my past and just HOW MUCH I took for granted…

  6. Caroline says:

    Matt,
    Thank you for sharing your story, I was very touched by the whole thing. It was great to see that one of your happiest memories took place at Disneyland, the happiest place on Earth. Although I am fortunate to be very healthy, I relate to your story in a different way. I relate to the chain reaction of other memories from the hardship I have endured. I too have trouble looking forward, sometimes I am so fixated on the past that I wish it was all a dream and I am just waiting to wake up. This is how you must feel when dealing with MS. I have read a few of your posts and it sounds to be that you optimistic and I admire that, I know we all have out bad moments, but it is important to be thankful for what we do have.

  7. Tiffany Chen says:

    Dear Matt,

    Thank you so much for sharing your story. I found myself reading multiple blogs of yours and they all are very eye opening! I can’t imagine everything that you have gone through the past years. I enjoyed reading your vivid memory at Disneyland! It really is the best place to be. I love how I can see that you continue to be strong mentally and emotionally through your words. I think there are always those days where you will think about the past, but I always tell myself that happiness is a choice. We get to choose how we want to feel and act (: I am looking forward to your future posts! Thank you again for sharing.

  8. Nicole says:

    This post was so inspiring for so many reasons. I love your transparency, for so long you have been trying to accept something that you have no control over. Admitting that you are unable to be fully content with your diagnosis is so powerful. I really enjoy reading through your blog and this post was especially empowering. The power of music and the ability it has to flood us with memories of our past is surreal. Thank you for sharing this story!

  9. Christine says:

    Hello Matt,

    Thank you for sharing. I truly am inspired by your story and hope you know how courageous you are. I do not know what you are going through, but reading your blog posts give me a glimpse of what it is like. I appreciate your candidness and want you to know that your story is making a difference in many people’s lives, including my own. I feel that there are times when I take life for granted, but I understand many do not have the capabilities that I have right now. I know that there is nothing that sets me apart from being diagnosed with a chronic illness or disability, which is why I strive to live each day as if it were my last day to enjoy feeling “free”. I know you probably hear this a lot, but I honestly wish you peace and happiness every day of your life. I hope you find comfort in knowing that you are doing the best you can with what you have. It could be a beautiful thing to remember the good times of the past, but it is also important to try to make the best of the present (even if it is just a moment a day). Thank you for being an inspiration. I wish you all the best.

  10. Sam Parrnelli says:

    Hi Matt,

    I sincerely thank you for sharing your story and perspective through these posts. I am taken back by your thoughts of adjusting with this new life. I do not have MS, but the more I read your blog, the more I gain an authentic picture of this transition and life change. Your experiences are truly eye-opening to the life that MS brings and it takes an incredible amount of courage to continue to share as life comes your way.

    My sister’s good friend and fellow nursing co-worker was recently diagnosed with MS at the age of 25. It was an extremely difficult time (maybe more than words can describe) for both this young woman and and the entire ICU unit as everyone is doing their best to comprehend this new normal. I will pass your blog onto her hoping she can seek out the right resources and understandings. Your perspective cannot be any more motivating for educating those and bringing awareness. I wish you all the hope, love, and freedom in the everyday… Please keep fighting the good fight!

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