I worry about writing on this topic. Simply because my intention is to solicit your thoughts, ideas, and experiences through the medium of this blog, rather than pontificate about myself and my particular situation. Therefore, as I write this please consider your personal situation and circumstance and be ready to share or respond - or at the very least commiserate with a like-minded soul!
Multiple Sclerosis. That is my personal El Guapo. Your personal El Guapo may be something entirely different, but there may be some commonalities running through our individual experiences and challenges.
With everything that comes with this disease and its distinctively unique signature, there is one overriding challenge that I can’t seem to successfully navigate. To employ a horrible pun, it may be the most crippling portion of my disease.
I’ve always been a big believer in ‘mind over matter’ - or at least my own version of mind over matter. I’ve always been pretty good at dealing with pain and discomfort. Physical challenges were opportunities I relished. Athletic competition and pushing one’s body to new heights was always something I enjoyed. I have finished a soccer game after damaging the ligaments in my knee. I injured my back making a diving catch in a intramural flag football game and finished the game (I couldn’t walk for a week after that night). I have finished a soccer game after knocking heads with another player, cutting my head open, and being knocked out. No pain, no gain! I take pride in having mastered my mind over matter mantra.
So when I was diagnosed with MS, I thought to myself. I can handle this. I can handle the pain, the fatigue, the loss of equilibrium and balance. I’ll even handle the loss of mobility. I take it as a personal challenge to walk miles around Disneyland with my children and forcing my legs to take one more dragging step. And then one more. And then one more. Well, as time has passed, my condition has progressed and I am now relegated to a motorized chair at Disneyland. I can’t play soccer in the backyard with my boys without threat of serious peril! (I fall easily and cannot brace myself because I don’t know how I am falling!)
What I was unprepared for was the mental challenges that have come with this disease. As a man, I take my responsibilities to provide for my family seriously. I take my commitment to my wife to be equal partners in raising our children seriously. I take my desire to serve others and lift the hands that hang down (Hebrews 12:12) seriously. To fail at the most basic of commitments, the most important commitments, is unacceptable to me. And I am fighting to find some sort of understanding. Some sort of balance. My expectations don’t match my physical ability (not to mention my mobility!).
I am struggling to find a mentally comfortable balance between my responsibilities and my limitations. How does one make a transition from things that were and always have been unacceptable to accepting that you are limited in critical functions/areas?
How do you accept limits without limiting your worth?
It makes me angry that I cannot clean the kitchen without completely wiping myself out. I rely on my oldest son to take care of so many tasks and chores that I should be doing and that’s not fair to him. And I could go on. But that’s not the point. The point is simply how is it possible to find peace?
To feel comfortable with a contribution that is so significantly limited?
I have deep and abiding faith in God. I know that this is temporary and confined to this life. This area is not where my concern lies whatsoever.
However, as my own harshest critic, it is hard to sit on the sidelines of life and feel worthy. It’s difficult to stand by and watch others carry disproportionate loads because you are unable. Feelings and thoughts of worthlessness, shame, and embarrassment invade my mind.
This is a work in progress. Mentally, I am trying to get my arms around this challenge.
What insight do you have? What wisdom might you share?
I got a little glimpse into that a couple years ago, when a back injury had me laid up in bed for a couple months. I eventually had surgery that fixed me, so in hindsight it's easy to see that my inability to do anything for my family was temporary, but at the time it was no sure thing that I'd ever be back to full strength. And the thing I remember most was that feeling of inadequacy, watching my pregnant wife not only doing every single thing that our kids needed and keeping the house running, but also waiting on me hand and foot. The day I got on a plane to go have my surgery, it was her birthday and she was 8.75 months pregnant, but she never uttered a single complaint.
The thing I had to remember was that SHE joined the same partnership that I did when we got married. They say marriage isn't a 50/50 split, it's a 100/100 split where each partner is giving their all to the marriage. I think part of that is because there are times when one of us can't give the full 100%, and when we go through periods where it's 100/50 or 100/0, our kids and our households don't suffer because of it.
I barely know you, Mike, but I've known Briana forever, and you are a blessed man. Remember that your 100% is whatever you can give right now, and it is enough. Even if it's all emotional/spiritual and not so much physical, that is enough.
(Disclaimer: I know our situations aren't very comparable because mine ended up being temporary, but I learned a lot in the relatively short time when I didn't KNOW it was temporary.)
I'm not sure if we have ever even formally met Mike and that makes me a little hesitant to comment, however, I have often wished for feedback in a trial so I thought I'd try to contribute.
I don't pretend to have all the answers here but I do understand what it feels like to be limited in physical ability. I have struggled with some chronic pain for about 5 years now and It can create some serious frustration (and not just mentally) In my worst moments I can sometimes feel abandoned by God. In my heart I know this is not true but I need more than a feeling to get me through it sometimes. I needed a lot more to convince me.
I loved your comment about your faith in God. My challenge, as of late, has been in transitioning that faith into full trust in God. I am beginning to discover that I am able to find some peace from my frustration when I do a couple of things.
First I have to contemplate (and re contemplate) and study about the true nature of God and his infinite love for His children (us). When I consider this deeply, I recognize that His desire to help us and comfort us is real. I just have think about my desires to help and comfort my own children in their trials to gain some perspective on the reality of that. If In my fallen, human condition I am able to love in such inexplicable ways, I imagine the power that is in Heavenly Father's love is... well...unimaginable. AND under every circumstance we are worthy of that love simply because we are His. He wants to help us have the greatest peace available to us, in our trial. AND He would take it away unless there were something important we needed to learn from it. Just like you would do for your kids and the ones you love!
It is only after I have gotten myself in this frame of mind that I can then move to the next step. I've only heard it a million times at church; to ask what do I need to learn from this trial. Unfortunately, when I ask myself this question without first getting myself into the right frame of mind, my answers turn a little cynical. I'm embarrassed to admit I can sometimes become a little angry and envious of others lives and their SEEMING lack of trial. However, I have realized that once I am in the right frame of mind I begin to see the specific principles that Heavenly Father is trying to teach me. My days become more focused on learning those principles. I have found that It helps me feel more purposeful and useful. Perhaps you wont be helping lift physical loads of care but imagine the spiritual and intellectual loads you could lift and how they could help move some serious mountains.
(sidenote: I also love reading scriptures about deliverance. They're awesome.)
I don't have widsom or insights, but I do however think you guys are the most awesome partnership and can overcome anything. I really enjoy reading this blog!
I will not pretend that the chronic pain I have dealt with is anything like MS. For right now it has abated after a rater radical surgical procedure. I have had two to date to try to get some quality of life back. I know how hard it is to be young, I am 34 and have 4 young kids, and not be able to keep up with even the smallest things. The hardest part for me was not the pain, it was the mental anguish I felt at failing in my duties. There were times that if my kids were fed microwaved chicken nuggets, bathed, and in bed I was having a good day. I am a giver, you can say as a member of this church I might take service to the extreme. It's borderline addiction in my husbands eyes. So being on the receiving end is a bit like torture. But I think The Lord wanted me to learn to receive, to give others the opportunities to serve. I would echo the words of another reader, your efforts are enough. Your heart is pure and in the right place. You will find small ways to serve your family. Take care of them emotionally if you can't physically pick them up and carry them. I want to thank you for sharing this with all of us, how brave and generous you are!! Briana you know I love ya, ever since we were 12 I thought you were amazing, and even more so today.
As someone who has just gotten on the other side of what has been the trial of our lives (my husband and I's struggle with infertility), I now can see the reason for it! In retrospect it is easier to see I think, but having the faith to get you there comes with experience and trust in The Lord, which I know you guys have! I now know that that most likely wasn't the trial of my life. Sure it was HARD, my yearning for a family was palpable and what we went through was heartbreaking!! We struggled a lot, but thankfully our marriage did not, it only got better! We are now prepared for so much more!! I'm hoping its just for raising twins and their stubborn, older and very active older brother... But I know better. My Heavenly Father loves me and I was being prepared for something more. We all are. That's helps me when I'm struggling with my new blessings and what will help me when a bigger life trial comes.
Mike- first of all, let me say that I know it's a lot "easier said than done" when people tell you stuff but they aren't the ones going through it. I understand that. But as you can probably guess, your family thinks about you a lot and worries, prays and tries to understand the "why" of what you're going through. In your situation I keep thinking about what your disease is teaching those around you. Sometimes I don't think it's God's plan to just affect you with your trials but those around you as well, and its always for their benefit (despite it being hard). So in that light, I think about the things that your children, for example, are learning and characteristics they are developing because of what you go through. They see Briana's self-less love, they see traits in a woman that they will look for when choosing a spouse of their own. They are learning hard-work, empathy, compassion, service, and so much more. I would be willing to bet money that years from now you will see the adults that your children have grown into and see the effects of your "inabilities" manifested as great "abilities" in them. So rather than seeing what your unable to do physically, try to see what you are able to teach them under these circumstances. I love you and pray for you and your family daily. Big hugs! ~Karen
Hi Mike, a mutual friend we share, Celeste Pearcy, sent me this post and asked if I would comment. She knows that I suffer from a similar illness, CIDP and formerly GBS, both similar to MS. MS attacks the central nervous system and GBS/CIDP attack the peripheral nervous system, but with similar results. I too am married with only one child though, and hold my faith close to my heart being a member of the Church of Jesus Christ of Latter-Day Saints.
Lately the thought that's helped me is, "I'm not done yet." The Lord is not done with your life, He is not done with your miracle. I have learned personally that He, the master of all lives, can make the most amazing things out of the most challenging. Anything is possible through him. So when I see distress or trial, I think, "Wait.He's not done yet." Good can still come from this. Your family will draw closer, your love with your spouse will grow deeper, you will yet inspire many others and hopefully, through it all, you will find yourself closer to your Heavenly Father. Then maybe you'll agree that it was worth it.
One final thought. My best friend died at 25 from MS. Not long before that happened, she and I talked about our mutual challenges and agreed that although they were horrible to go through, we wouldn't have changed a thing because it had made us who we are and we didn't want to lose that. Sending prayers and happiness your way.
Mike, your light and faith is an example for many to see. Even with your physical challenges you continue to accomplish more good in this life than most physically capable men. I'd be happy to be half the man that you are.
Stacia, thank you for taking the time to post comments. It is definitely true that I accept my challenges and wouldn't change my experience. Working to get over the mental hurdles and knowing that things only get worse with this disease are the hardest part. Again, thanks for your thoughts and insight!
I have some chronic health challenges (not diagnosed yet) and all I can do is rely that the Atonement really does cover all. It covers my children who have a Mom who does less than she wants, it covers my marriage because my husband has more on his plate than if his wife was healthy all the time, it covers my inabilities to serve as much as I would like. I have to believe that He will do what He says He will do if I do my part and live with faith and optimism. If I do ALL in my power and sometimes that means submitting to His will and letting go of my expectations and allowing the refiner's fire to burn off the dross. Hugs to you and your family (I met Briana at the Power of Moms retreat). My recent post Sweet and Sour
Hey Mike, As always you and your family are always a heartwarming inspiration for me. The stories of your trials.. your joys and the love of your family help to uplift my spirits. As for your question.. I have been through my own share of troubles, worries and tribulations. I have just one motto that I tell others and I truly live by. That everything happens for a reason, even if you can't see the reasoning behind it. I think back on those moments in my past that at the time I wished had never happened and I ask myself if I would change the outcome now. Each time I answer no. Those moments made me who I am today. They shaped my personality and my actions. Without those trials I would have been a different person. I would have met different people and had different experiences. I may never have met or married my husband or given birth to my beautiful baby girl. Even the trials of others that I wish with all my heart that they make it through.. though terrible also help shape me into who I am. Your trials now are not only helping to teach you important life and spiritual lessons but they are also helping to shape your family and your friends. Someday in the future these moments will make a huge difference in your children's lives. Don't focus on what you can't do but on what you can and know that it's enough. These moments are all important and have a reason. Trust in Him and trust in the love of your friends and family. <3 Love you <3
This mental challenge you speak of, is it like you just can't allow yourself to let go of all the old expectations you've had of yourself as a husband and father? Like as a child all the things you imagined you would do and be?
Logging you in...
snidog 1p · 619 weeks ago
The thing I had to remember was that SHE joined the same partnership that I did when we got married. They say marriage isn't a 50/50 split, it's a 100/100 split where each partner is giving their all to the marriage. I think part of that is because there are times when one of us can't give the full 100%, and when we go through periods where it's 100/50 or 100/0, our kids and our households don't suffer because of it.
I barely know you, Mike, but I've known Briana forever, and you are a blessed man. Remember that your 100% is whatever you can give right now, and it is enough. Even if it's all emotional/spiritual and not so much physical, that is enough.
(Disclaimer: I know our situations aren't very comparable because mine ended up being temporary, but I learned a lot in the relatively short time when I didn't KNOW it was temporary.)
Sara · 619 weeks ago
I don't pretend to have all the answers here but I do understand what it feels like to be limited in physical ability. I have struggled with some chronic pain for about 5 years now and It can create some serious frustration (and not just mentally) In my worst moments I can sometimes feel abandoned by God. In my heart I know this is not true but I need more than a feeling to get me through it sometimes. I needed a lot more to convince me.
I loved your comment about your faith in God. My challenge, as of late, has been in transitioning that faith into full trust in God. I am beginning to discover that I am able to find some peace from my frustration when I do a couple of things.
First I have to contemplate (and re contemplate) and study about the true nature of God and his infinite love for His children (us). When I consider this deeply, I recognize that His desire to help us and comfort us is real. I just have think about my desires to help and comfort my own children in their trials to gain some perspective on the reality of that. If In my fallen, human condition I am able to love in such inexplicable ways, I imagine the power that is in Heavenly Father's love is... well...unimaginable. AND under every circumstance we are worthy of that love simply because we are His. He wants to help us have the greatest peace available to us, in our trial. AND He would take it away unless there were something important we needed to learn from it. Just like you would do for your kids and the ones you love!
It is only after I have gotten myself in this frame of mind that I can then move to the next step. I've only heard it a million times at church; to ask what do I need to learn from this trial. Unfortunately, when I ask myself this question without first getting myself into the right frame of mind, my answers turn a little cynical. I'm embarrassed to admit I can sometimes become a little angry and envious of others lives and their SEEMING lack of trial. However, I have realized that once I am in the right frame of mind I begin to see the specific principles that Heavenly Father is trying to teach me. My days become more focused on learning those principles. I have found that It helps me feel more purposeful and useful. Perhaps you wont be helping lift physical loads of care but imagine the spiritual and intellectual loads you could lift and how they could help move some serious mountains.
(sidenote: I also love reading scriptures about deliverance. They're awesome.)
Shannon Petersen · 619 weeks ago
Lynita · 619 weeks ago
Heather Andres · 619 weeks ago
Karen · 619 weeks ago
Stacia Jacobson · 619 weeks ago
Lately the thought that's helped me is, "I'm not done yet." The Lord is not done with your life, He is not done with your miracle. I have learned personally that He, the master of all lives, can make the most amazing things out of the most challenging. Anything is possible through him. So when I see distress or trial, I think, "Wait.He's not done yet." Good can still come from this. Your family will draw closer, your love with your spouse will grow deeper, you will yet inspire many others and hopefully, through it all, you will find yourself closer to your Heavenly Father. Then maybe you'll agree that it was worth it.
One final thought. My best friend died at 25 from MS. Not long before that happened, she and I talked about our mutual challenges and agreed that although they were horrible to go through, we wouldn't have changed a thing because it had made us who we are and we didn't want to lose that. Sending prayers and happiness your way.
BTW, if it would help I wrote a story about this very question called, "Why I didn't ask why," and it was published on Deseret Book's Time Out For Women website: http://tofw.com/Why-Didnt-Ask-Why-Stacia-Jacobson...
And I wrote about some things that are helping with my recovery here on my blog, that might help: http://www.staciajacobson.blogspot.com/2013/05/mi...
My recent post Mini Miracles: How I've recovered from CIDP
Little bro · 619 weeks ago
Mike · 619 weeks ago
cheryl · 619 weeks ago
My recent post Sweet and Sour
Jennifer · 619 weeks ago
As always you and your family are always a heartwarming inspiration for me. The stories of your trials.. your joys and the love of your family help to uplift my spirits. As for your question.. I have been through my own share of troubles, worries and tribulations. I have just one motto that I tell others and I truly live by. That everything happens for a reason, even if you can't see the reasoning behind it. I think back on those moments in my past that at the time I wished had never happened and I ask myself if I would change the outcome now. Each time I answer no. Those moments made me who I am today. They shaped my personality and my actions. Without those trials I would have been a different person. I would have met different people and had different experiences. I may never have met or married my husband or given birth to my beautiful baby girl. Even the trials of others that I wish with all my heart that they make it through.. though terrible also help shape me into who I am.
Your trials now are not only helping to teach you important life and spiritual lessons but they are also helping to shape your family and your friends. Someday in the future these moments will make a huge difference in your children's lives. Don't focus on what you can't do but on what you can and know that it's enough. These moments are all important and have a reason. Trust in Him and trust in the love of your friends and family. <3 Love you <3
Sara · 619 weeks ago