Guilt? Disappointment? Continual Loss?

[Seasha]

Thanks, Marco!

[REG53]

Thank you Marco.

[pennstater]

Thanks for sharing Marco. Powerful essay.

[Marco]

So here's an update on where I am. With my therapist we've done an assessment of where I am in the grieving process. I fully understand the grief stages are fluid, not everyone goes through every stage, not necessarily in order, and vacillating between stages also occurs.

Denial and isolation

Life has put a lot of hard miles on my body. I've been in well over a dozen car wrecks, played sports and was in the military. So having body nuisances, aches and pains is fairly common.

Prior to being diagnosed I had unrelenting back spasms that didn't respond to PT, massage, injections, etc, etc. I've had a similar situation a few other times in my adult life. It was then that my PCP ordered a MRI a out of an overabundance of caution. That MRI showed a spinal cord lesion and referral to a neurologist. A few weeks later brain MRIs, spinal tap, blood work, neurological exams, and comprehensive review of my medical records all pointed to MS.

I consumed as much information as possible and was hoping for RIS or CIS, but the reality was MS was the correct diagnosis and that was that. Instead of a prolonged denial period my wife and I decided to fight the disease.

Denial stage maybe 2-3 months


Anger
I have never been angry about the diagnosis. My wife and I are both Christians and our faith acknowledges that on Earth we will have troubles, trials and tribulations. We are also comforted by Romans 8:28, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose."

Anger stage: never happened.


Bargaining
Much like the anger stage I never entered the bargaining stage. My wife and I know God loves us and has a good plan for our lives. If it includes MS than His Grace will get us through it.

Bargaining stage: never happened


Depression
I believe MS both directly and indirectly has help cause depression (and anxiety). I have struggled in this area for years and on medication and in therapy for it.

Over the past few weeks we have already made some progress with EMDR and have a number of other target areas selected.

Work in progress


Acceptance
I have accepted the fact that I have MS, but not resigned to it.

I have accepted what has been possible.


Opportunity
Looking at a bigger picture of my life, not just MS, we've seen a pattern starting in early childhood.

Growing up, I never had a safe space to express my emotions. Many emotions were often seen as a "weakness" and I was punished for expressing them, so I simply stopped expressing them.

One example was being run over by a car when I was 7 or 8. When my dad came home I was hiding in the bedroom. My neighbors came over to ask my dad how I was doing and my dad had no clue. I was more afraid of getting in trouble with my dad than dealing with the pain I was in.

I played competitive sports where you played through the pain. The military also reinforced the mentality where we pushed through during arduous times.

Long story, short I have never had a safe space to express any "emotions of weakness." I've never really allowed myself to truly lament any of the hardest portions of my life. I have always just tried to push through...

This is the current focus of therapy, devotional study, reflection and meditation. I am working on giving myself permission to experience sorrow, frustration and all those other emotions that have been suppressed since I was a child. MS is just one aspect of the bigger picture of my life.

I now long to be free of my emotional bondage and yearn to be set free. Again my faith will play a big role in this and I am anxious to make additional progress to become a more wholee person. This is just one of the many things I am grateful for this Thanksgiving.

I wish you well...

[KoKo]

Thanks for your update, Marco!

Looks like great progress is being made!

Take Care

[Mamabug]

That's exactly the goal - more peace and joy.

Thanks for your update and continued vulnerability. May you continue to move closer to your goal.

[REG53]

Marco, your faith in God will get you thru what you are enduring. Romans 8:28 is a verse I cling to.

God is Good. Praying for you Marco.

[NoraS]

Please keep updating this. I think I've gotten more from this thread than all the other posts I've read here and elsewhere.

I wasn't military, but I was my father's only son. Weakness and emotions weren't tolerated. Even public displays of humor were frowned upon. Over the years, I've had countless doctors and co-workers tell me that I'm the strongest person they've ever met. I was still in my teens when my (older) cousins started looking to me for guidance, and every group of friends I've had since age 5 has referred to me as "mom".

Throughout a bad marriage and worse divorce, the remarriages of both parents, the daughter's life-threatening chronic illness, and then a widowed grandmother who couldn't live alone, I had to be the strong one. I had to stand up to 32 relatives to follow my grandfather's wishes to take him off life support.

All these years, I was the wage earner, the grass mower, the chief cook and bottle washer. And the guilt is resting heavy because there's so much I can no longer do. You've all given me hope, but Marco, you are the one who is forcing me to see that I need to deal with the grief upfront before I let it take me down. Thank you.

[palmtree]

You are one of my favorite people on this site. I think of all the information you have contributed and the wisdom you have shared. In my humble opinion you are not shut down and stoic. You are gentle and strong.

Maybe you have been coping with the diagnosis by helping others and now it’s time to be more selfish-maybe too selfish for a little while.

A wise person told me when I was going through the pain of becoming an adult that the only way out of it is through it. You have been playing beautiful chopsticks and now you are about to tune the piano and boom out Beethoven.

These feelings are painful and it seems like they will never end. But it sounds like you have a therapist that you trust and won’t let you fall. I need to get off my soapbox because I don’t know if I will ever be able to face MS completely. The fact that your wife is accepting is a huge asset. She may have her own pain and disappointment.

After I became disabled my husband lost a business partner, a dream of having a large family, a wife who could keep the house clean and financial security. He calmly, stoicly went from one task to the next until he broke. He waited too long to face everything and thought therapy was only to talk about sexual performance.

He thought the answer was to find someone else so we split. I loved him so much I wanted him to find someone because I wanted him to be happy.

We never got back together because the house we bought was in a part of town where the weather gets warm. I had to escape.

We took a vacation to try to fix it. We went to Italy and had an icy refrigerated hotel room. It was wonderful to be back there and I enjoyed a lot of it but when it came time to sit down and have dinner together we realized how far we had drifted apart.

But all that is my story. This is your story.

It there a vacation you could take where you would be safe from the hot sun? Greenland, Iceland, Norway, the train ride through Banff in Canada? Somewhere! It looks like the weather in that area will be mild this winter but it won’t be 90.

I send my heart out to you and if there is anything we can do to help we will.

[Temagami]

Just got caught up on your post/thread. I´m wondering if guilt is really the descriptor here as you did not do something to cause the MS. Would framing your quest through the lens of expectations allow you to tease apart the emotions with a balance between expressing the emotions and finding a resolution? You´ve got expectations that you impose upon yourself, ones that you have for being in a marriage and ones that you may think that your spouse has, but maybe she does and maybe she does not. Then there are the expectations from society, community and your Church. At some point you may say that you are doing the best that you are able with the hand you have been dealt and that is more than good enough.

George Jelinek´s website of overcomingms has great articles about meditation for dealing with pain and he and his co-author (Hasan?), name escapes me, did a study that found that quality of life was NOT correlated to whether one was wheelchair bound or not, rather, it linked to the habits of mindfulness and mediation.

After a long marriage, I am now solo and all chores fall to me. I cut myself slack as I only have x amount of energy a day. If a chore does not get done, I know for sure it will be waiting for me the next day, days. My goal is to not do something stupid that leads to bodily harm or worse. By setting the bar as such, I am "successful" on a regular basis.

The following my or may not help you. I met someone who took a year off of work in her fifties to get sober while her h worked full time, in another state. She often felt guilty not working and would look for employment instead of her full-time sobriety journey of yoga, mindfulness, nature. She has now been sober for two years and their marriage is in a much stronger state. Taking time for your self-care benefits you but your wife also benefits as does your marriage.

[Marco]

Marco, your faith in God will get you thru what you are enduring. Romans 8:28 is a verse I cling to.

God is Good. Praying for you Marco.

Thank you so much for your prayers. During difficult times I can look back and see where God got me through the most challenging parts of my life. That brings both comfort and confidence during my present concerns. This is certainly a time of personal growth for me and glad I have this opportunity to find more freedom.

Thank you again.

[Marco]

NoraS,
I can certainly relate to your statement. I had a paper route as soon as possible then started working in my uncle's restaurant at 12..In high school I had 3 part-time jobs, worked full-time during the summer, etc etc.

So losing my ability to work was a real blow that was never properly grieved. I felt guilty for not being an active provider for my family. I still bring in money because of disability and military streams, but it's different. Now my "job" is to take the best care of me possible - stay healthy and fight the good fight of faith.

The reality is emotions are valuable and necessary to be a healthy person. Just stuffing emotions can only go on so long before it has detrimental impact. It's not just us that suffers either, but the people in our lives. We all deserve better...

I'm glad this post has sparked some thoughts for you and can only hope we both continue to benefit from the shared wisdom of this site.

I know that earlier feelings of "guilt" were wrong because I didn't do anything wrong. Sorrow is the more appropriate emotion and just that change in thought is helping me grow.

The other part is to remain grateful for all the capabilities and blessings that I do have. Then spending more time focused on living in today and less on things in the past.

I wish you well...

[Marco]

I need to get off my soapbox because I don’t know if I will ever be able to face MS completely.

Being a chronic, progressive disease, MS is not just one loss, but often a continuous cycle of losses. Oftentimes, you are dealing with a new loss before properly dealing with the previous one(s).

Thank you for your kind and wise words. Also appreciate you sharing part of your story so we can all learn from one another.

I believe many times my wife has a harder job than I do. It's tough watching someone you love suffer and not have the ability to do much about it. She's one of the reasons I am determined to continue to make progress. I want to be the best person and husband possible giving the circumstances.

Each day has challenges, but also opportunities and we all need to try to take advantage of more opportunities.

I wish you well...

[Marco]

The following my or may not help you. I met someone who took a year off of work in her fifties to get sober while her h worked full time, in another state. She often felt guilty not working and would look for employment instead of her full-time sobriety journey of yoga, mindfulness, nature. She has now been sober for two years and their marriage is in a much stronger state. Taking time for your self-care benefits you but your wife also benefits as does your marriage.

I believe I'm dealing more with "shattered dreams" than anything else. A large part of my life was tied up with my career and when that disappeared that left a void. At the same time I was dealing with losing my abilities to walk, talk, drive, eat, etc, etc like a normal person.

So I entered survival mode just trying to keep my head above water by treading. I was overwhelmed on every level and just started to fight back. I did physical, speech, and occupational therapy trying to right the ship, but never did psychological therapy to help that aspect.

I am now circling back around and working on the psychological aspects trying to become emotionally healthier. I deserve it, my wife deserves it and we deserve it together.

I appreciate you taking the time to read and respond to this post and have given me more to think about.

I wish you well...