Am I still a good father? How do I still function as a
husband? How can I still be a good dad and husband? Am I putting too much on
them and others? Am I still being a good friend? How can I keep up at work?
Questions after question after question pours through my mind – doubts swirl,
and once again, I am left wondering these and so many other questions, trapped
in the “hell” of my mind.
Chronic disease affects so many physical aspects of a
person’s life. It limits what a person can do. It fills your body with pain and
discomfort. It brings exhaustion from the simplest tasks, and it drains so much
physically from you. If it stopped there, that would be enough, but it does
not.
John Milton once wrote, “The mind is its own place and in
itself, can make a heaven of hell, a hell of heaven”. Aside from the physical
pain, and the physical tole it takes on your body, the mental anguish is
sometimes worse. The mind, I have found, is a constant battle. Fear, doubt,
uncertainty, sadness, and so many other thoughts and emotions constantly parade
through your mind and you are left battling thoughts that will not end.
Some of these thoughts are real and legitimate, others are
simple manifestations of fears, doubt, and pain. It is so easy to, in a sense,
take a trip “Down the Rabbit Hole” and end up in places you never intended or
wanted. Regardless of whether or not your life is wonderful or a struggle, the
mental anguish that disease brings along with it, truly change so many things
in a person’s life from a “heaven to hell.”
Personally, it often causes me to imagine the worse-case scenario, and
doubt every aspect of my life. How can my spouse love me with this? How can I
be the father my children need? How can I provide and keep working? It messes
with your self image, body image, and any “image” of yourself that you can
think of. Even things that in reality are not affected or touched by this
disease, are in some ways affected because of the battle and struggle you are
facing in your mind.
So many times I have battled the new place I have in my
family. I have the most wonderful, supportive, and loving wife, but I see the
things I cannot do, and I struggle and doubt. I love her, and she loves me, but
the doubts and pain I face cause me to withdraw and imagine the worse. Even
though our relationship is so much more than the things missing, too often it
becomes my singular focus – my battleground in my mind. In this, I do not give
her the credit she has shown over and over again, and I short-change the love
that not only brought us together, but keeps us as one.
I look at my children, and the love we have for each other.
I see the compassion they show me and all the ways they help me. Yet once
again, I see the burden they face, and all their father cannot do, and once
again doubts creep in. Even though they never focus on the things they miss, it
often fills my mind.
I see friends around me, and I see people who care for me
and I for them. I see bonds that go back for years, and I see all the things we
use to be able to do together. I now see the things I cannot do, and how things
have changed because of this illness, and it hurts, and many times consumes my
vision.
These same things could be said for work, family, ministry –
on and on the list goes, and all I can see is the “hell” that I perceive is my life. This
perspective can be all consuming. It can cause you to withdraw even further,
and it colors everything you see. It discourages and becomes a self-fulfilling
prophecy.
This last month was especially discouraging for me, because this
became my focus. All I could see was the “hell” of my circumstances. I saw
things I could not do, things that were now missing in my life, decisions I was
now having to make, and struggles I was having in so many areas. It caused me
to doubt and wonder about the future, about relationships, and about myself and
others around me. In these thoughts, the hurt and pain consumed me, and it was
all I could see. I was in tears most days, I hurt those closest to me, and I was
so discouraged.
In conversations with others around me, but especially my
wife, she continued to love me (in spite of the hurt I was spewing at her and
others), and she showed me that so much of my struggle was simply “me being
stuck in my head”. Were these things I was feeling real – yes, but really not
the all-consuming, all-encompassing things I thought they were. She reminded me
that our relationship and my life were and are so much more than these
difficulties.
When you are stuck in this mindset, it is hard to will
yourself out of it. During this week, my bride showed me that these doubts,
fears, discouragement, and pain only defined me if I allowed them too. These things
were only all-encompassing if I allowed them to be. Through her love, care, and
patience, she showed me what I really needed to see, and help me realize that I
decide if the “hell” of all my physical struggles will really be a “heaven or
hell” here on Earth.
Without her love, and the love of others, I am not sure in
what place I would be. When we are in the “hell” of our thinking, we need
others around us that can help us really see not only reality, but hope. It may
be overwhelming, it may be difficult, it may affect so many things, but it only
affects your mind and spirit if you allow it. Don’t get me wrong, we all have
bad days and weeks, and I know I will have many more in the future, but I also
have people around me who will fight to keep me out of that place.
Have you ever been in a position like this? Have you ever been
consumed by the pain you are felling? What did you do to “right the ship” of
your thinking? Whether you are fighting chronic illness in your life or not, we
all have struggles and pain that threaten to overwhelm us, as they did for me
this week. When this happens, we need to see it for what is it. We need to
remember that our pain and struggle is only half of the battle. What we think
and dwell on in relation to that pain and suffering is often more important,
and will have more effect on our fight than even the pain we are suffering.
I'm not the patient but the Caregiver. My husband has Lewy Body Dementia with Parkinsonian symptoms. This is why I joined this group because evidently they are closely related but your article hit home with me being the Caregiver. He is not the man he was but that is not a problem for me I know it's the disease but finding you and reading this is what I needed at this time in our journey. My mind hardly ever shuts down unless I am sleeping and I really have to decipher what is actuality or just junk! Sometimes one can feel alone in their journey with whatever they are dealing with and it's sooo good when GOD puts something(one) in your path to get you back on track. My brother has Parkinsons. GOD bless you sir and your loved ones!
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