Acknowledging Our Fears, Living with Heart

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I haven’t written a blog post in quite some time, however since beginning this journey to figure out IF there is something going on with my heart, a lot has been swirling in my writer’s mind and now I felt it was ready to spill out.

It’s an interesting feeling when one is faced with a ‘possibility’ of something being dangerously wrong with one’s health, it causes one to begin seriously reflecting, or at least that is what it’s done for me.

Seventeen years ago I was diagnosed with MS, it onset 22 years ago and I’m one of the lucky ones, I wasn’t thrown for a curve when I was diagnosed, but relieved. I was relieved because it validated all that I had been feeling for nearly six years that the doctors ignored. It validated that I wasn’t crazy, I had already figured out what it was and brought that possibility to my doctors and then it was indeed confirmed. Way back then, I was a single mom of 3 YOUNG children, I had no time for this disease to stop me and my determination and yes, stubbornness kept me going. I often say that I was not built to break and I know that I’m not.

Back in 2002, the ONLY thing I was concerned about was my kids, what they would feel, their fears and trying my very best to assure them that their mom would not die because of this disease. Over the years I have fought very hard to do my very best, I have always tried to show by being a living example that our diagnosis doesn’t mean we have to believe the prognosis and it also doesn’t define who we are. It took me years to actually embrace having MS and I have learned to be one with this disease that lives and shares this body with me and yet I am not this disease. Up until this heart thing, which has yet to be defined, I have hopefully shown my now young adult children, that their mom is strong and that we should never give up, to always show compassion and to try to be empathetic to things or conditions which we don’t always see because it’s not visible or it’s something we don’t understand.

This heart thing, as I call it for now, has literally caused me to pause and reflect, it’s brought me to tears because yes, I am human, I do get scared, angry, all of it. I don’t scare easily however there are moments I am scared. Right now, I am scared and simply telling me not to be, or reminding me that I’m strong is kind however not practical. It’s normal to be scared.

When I was growing up, my biggest fear was my parents dying, specifically my dad since I grew up closest with him and then he died at the young age of 59 and my heart broke but I survived. When my mom passed this past June at 77, the grief I felt blew me away, I had no idea the impact of losing my mother would feel like and as I’m writing this, I can feel the emotions of her loss swelling in my eyes and my heart. The pain of losing my mom was really unbearable, but I survived and they both live on within my heart, within me and within each of my children.

There is still a part of me that is afraid of death, however not for the same reasons or the way as when I was a child/young adult. I have these humans who are my heart, my children, 3 amazing humans who wear my heart outside of my body every day and I can’t imagine not being here or them feeling the pain and worry of losing me, which if that were to happen, is something they would inevitably feel and that would be normal, this is not to say that I’m going anywhere, however the one thing that I’m sure of is that eventually we all die and it’s how we have lived that matters. Worrying about the ‘what if’s’ doesn’t serve us, worrying doesn’t change whatever ‘could’ happen, it simply takes up space in our heads that can actually make us sick and that’s not healthy for any of us no matter what that ‘worry’ is.

Having MS is something I understand in every cell of my being, I have learned how to be in relationship with it and I also know that I will not die from this disease, perhaps a complication of it but technically not from it and it is also probable that I will live a long healthy life with it, as most now do thankfully.

Having a doctor tell you that there might be a heart condition literally sends shockwaves running through one’s body. I believe this should cause someone to pause, it has me. Of course I keep telling myself I’ll be okay, that whatever it is I’ll/we’ll deal with it and at the same time I recognize that the reason this scares me a bit more is because it is my heart, I only have one, there is no negotiating the terms, there is no other part of my body can compensate for what could be wrong AND I also know that this brings to reality my own mortality as I know it brings the same to my kids. I am aware that it more than likely scares the hell out of them, and I’m also aware that they all are dealing with this mystery and concen in their own way.

The possibility of having a heart condition made me realize even more now than ever, just how important life is, how precious our moments are and how important those in our lives are. It also puts into a very clear perspective, even more so than before. I clearly see what is important, how to, in a healthy way, let go of things or people who are simply not meant to continue on this life journey with us, to continue being thankful for the moments we had, let go and to also continue to embrace those who show up and love us, really love us.

I have no control over MS or even what could be wrong with my heart, if something turns out to be not right, however as always, I know that I have complete control over how I prepare and how I react/respond. The way I am and have always prepared, is to FEEL, to really feel all of it, the fear, anger, grief, and possible loss of the ‘me’ that was and know that I will adjust to whatever will be and then take care of her to the very best of my ability.

I am acutely aware that life is meant to be lived and how we live is what matters, how we love matters. I know in my heart this truth and it’s taken me a long time to embrace this truth, that everything is temporal, change continuously happens. Who we are is not the things we have, the illnesses we might be diagnosed with, the money we have or might not have, the titles we wear, or have been given, the jobs we might have or not have and the list goes on and on… everything we think we are, are actually aspects of ourselves but not who we are.

I know that I can ‘wish’ myself well, pray all is okay and hopefully in the end, after all of these tests, my heart will turn out okay and is healthy and there is also a possibility that it’s not.

What I know for sure I can’t do, is bypass any of how I’m feeling, not spiritually or otherwise. I MUST, if I am to be true to myself, to the body, is FEEL every damn thing and allow it to come out in whatever way it must, even if it means I have moment of sobbing, which over the past couple of weeks I have done quite a bit of. Crying is not a sign of weakness, it’s a healthy way to discharge, to allow ourselves to feel and release and it can and should happen as often as necessary.

One of the many reflections I’ve had after the initial ‘blaming’ of what is the ‘reason’ for what could be wrong, like family history and genetics, which is a real possibility in addition to acknowledging my own contribution to this. Over the years I’ve had to make choices on how to handle flare ups and or disease progression, to live well with this disease and that meant taking medications that had risks in order to give me back the ability to walk, feel, and move in general. I had to make choices for what was then the ‘now’ and that also meant being ABLE to take care of my children.  I was always aware of the risks and one of them was long term heart damage, however in those moments, the present was more important to me than the ‘possibility’ of what could happen 10-20 years from then, well those possibilities are here, 10-20 years later is now and I can’t go back and choose differently, nor if given a chance would I. I think about what my kids might think or feel, will they blame me and my choices for a condition that had I not taken those medications back then, I might not be here with another possible and yes, life threatening condition now? Will they be able to understand through possible anger, fear and grief that I did what I had to do so they’d have their mom, so that their mom would be there for their amazing moments and their struggles, for all of it? Will they forgive me and can I forgive myself?

Were the choices that I made back then made in fear or desperation were they done with mindfulness? I would love to say that I always made them from knowledge and mindfulness, however the truth is many times it was from fear, fear of losing my abilities, of not being ‘able’ and it was only in the most recent years that I’ve learned to pause and allow choices to be mindful, not jumping to have surgery to ‘fix’ my frozen shoulder is a very good example of taking that pause, choosing to do intense physical therapy and having the patience to allow the healing to happen and not going for a quick fix, however with this and probably just simply wisdom and age, that choice was a bit easier. Dealing with MS and the way in which it can steal parts of us is different, especially when there are drugs like solumedrol to quickly ‘fix’ something that might or might not fix itself over time and when my kids were young, I felt I didn’t have that ‘time’ to take that leap of faith, today I do pause and I do try to make decisions from a place of calm instead of fear, 4 years ago this month was the first time that I had to put that into practice.

I am sure or at least it’s my hope that anyone facing their own mortality gives them a moment to reflect and find new appreciation for life. It really shouldn’t take that for it to happen, however realistically that’s usually how it does for us humans. This is not my first rodeo with having to cope with a curve ball, however it’s very different then anything I’ve ever had to face or deal with before.

Am I still afraid of death, no, not the same way that I used to be, however I am still afraid of not being here, on this earthly plane, of not seeing my children continue growing into their own adult selves, grandchildren (if that is in the cards for them) and basically having the gift of seeing how they continue to mature and grow. I am, even with this scare, very sure I’ll be here for all of this or at least that is my hope and we must remain hopeful, with everything.

Life is so precious, we are really only here for a moment, that’s the truth. Live well, live grateful, even during the hardest moments and know those moments and how we cope with them are the lessons, have faith, be accepting but not apathetic, be the very best you that you can be, love big and appreciate it all…. every damn moment.

I’m not going anywhere, at least not now, these are just my feelings turned into print that I hope will inspire, give hope, put into perspective, help heal and or relieve concerns and most importantly, I wrote this for my kids….

I love you all so much and I always will …your mama bear otherwise known as LBZ

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