living in AZ starting my 8 weeks treatment at Shea Medical lyme voiceAugust 7th,2013 – As a longtime fan of Hoarders, it doesn’t take a psychology degree to realize that most hoarding tendencies began after a traumatic event in that person’s life. Willing, yet helpless family members vividly recount years of “normalcy” washed away after great loss or change that the hoarder is unable to cope with or process through. Grief and loss take on many forms for different people. I can only speak to my own experiences and in no way wish to generalize anyone’s loss.

Some of life’s great sorrows and hardships are unavoidable. Many can be avoided by conscientious living, making wise choices, but many, many, many cannot. Loss that can be explained and rationalized is easy for me to wrap my head around. I was speeding, therefore when I lost that $150 to pay the ticket, it is an “identifiable” loss.

Cause and effect. Commission vs. omission. As my pain levels have become more manageable, it opens the door to evaluate the last 18 months of decline. Just like the hoarder, and the home’s inhabitants, have become desensitized to the environment through prolonged exposure. In my case I called this process: modifications.

Modifications when you are living with chronic pain look like this:

  • You can rarely make evening plans in advance because you never know when the fatigue will hit or how long it will last.
  • If you go to the grocery store, you time it so that people will be home to unload and put away the groceries because you know that your legs won’t hold up through both the shopping trip and the unloading, that is two events and you can only handle two events on a really good day.
  • You take your kids places, but you sit the entire time, truly unable to participate physically. Emotionally you can smile and be supportive, but internally you know you desire so much more.
  • You quit keeping up with anything that isn’t critical to survival. Now I know this is subjective based on life goals, personal drive, resources, and cultural standards. But for me, in my world, and in my house, it felt like we were just hashing out the basics.
  • You lose EVERY library book. You cringe when kids bring home yet another book that you know, you will eventually end up paying for. But you would look like an idiot if you told the teachers to please not let your kids check out anymore library books.
  • You spend more time on the phone with your health insurance provider then you do spending time with people who care about you, I could go on but you get the point.

These last two weeks I have been consumed by looking back and assessing the “desensitization” that has occurred because of my pain and fatigue. Don’t get me wrong, I’m not berating, my day-to-day choices. For the last few years, I worked endlessly to meet the needs of my kids in accordance to our household standards. I literally prayed daily and hourly that God would give me the physical strength to do what needed to be done. Mentally I had little room in my life for anything that wasn’t helpful in my daily tasks; too stay positive raise my kiddos.

For me that meant that I went through several periods over the last seven years where I couldn’t handle watching TV or listening to music. It was too emotional; every commercial reinforced the pursuit of stuff. I felt the emotions of every TV character I watched. And I know that movies are designed to engage you in the lives of the characters. But because of the amount of pain I was dealing with. I was constantly trying to keep my attitude and heart in the right place; in no way could I handle the emotions of someone else. I could feel their pain in my bones. It was as if their (albeit mostly fictional) pain became my own.

I couldn’t distinguish the normal lines between empathy and sympathy.

Empathy: the ability to identify with and understand somebody else’s feelings or difficulties

Sympathy: the ability to enter into, understand, or share somebody else’s feelings

And the message and the end of most shows and movies, was so superficial that I couldn’t stomach it. As I expressed these frustrations I remember my sister saying “it is just entertainment, every show you watch isn’t going to match your life philosophy.” But I didn’t have any emotional energy to sort through any of it. This never lasted for more than a few months at a time. But for me it became a learning time for choosing to stop all the background noise, and carefully orchestrating exactly what I was hearing. For me; that meant inundating myself with hearing scripture, Christian music, listening to pastors teach online, and memorizing scripture.

I have many labels to slap onto the seven years that I have struggled with pain and fatigue. Desensitizing, modifications, hanging in there, doing the best we can, working within our circumstances, and essential vs. nonessential activities. Regardless of the label on the outside this box, as I continue to peer into it, I feel like an isolated family member walking into the house that I no longer recognize. You know, they gasp, and wonder how things have gotten to this point?

Well it is easy to know why physically I was struggling through those years. But emotionally I’m struggling to grasp the extent of loss that has unfolded these trying seven years. I’m sure those of you who have lost a dear loved one fully understand this journey much better than myself. The Dad who passes away while his children are young, there is acute and chronic loss. The losses will unfold for years as events continue to pass without him. Maybe your losses are entangled in the life of an addict.

In which case you are along for the ride. In essence what I’m wrestling with is not just the past loss of so much suffering, but how that has and will affect my kiddos. AND, maybe for the first time understanding that the loss of living with this disease will continue to unfold within the lives of our household .I can picture the parenting-marathon that lies before me when I get home. As we all adjust to the traumatic 12 months leading up to my two month absence.

I remember when my brother Kevin was hospitalized for meningitis; I was around ten years old. It was a cycle of myself and three siblings being in the home of a friend, and off to another one the following day. “House-hopping” mingled with the impending fear of medical uncertainty was very frightening. And that was with a sibling, I can’t imagine the fear involved when it is a parent whose life is on the line, which was one of my worst fears growing up. Heck, even now.

So, in a conscientious effort to not be featured on a future episode of Hoarders. I have given myself “space”. I have not been making phone calls or emails; I’m just allowing myself to grieve and try to heal emotionally and physically. The treatment program consumes most of the day, and by the end I’m exhausted. I can’t look at Lyme’s support websites, because far too many of the people are living in agony, unable to go to the store, or cook a meal. For now, that reality is too much. Instead I will focus the energy that I have on my reality, and getting back to a place where I’m actually involved back in my life.

I’m very thankful for this amazing opportunity to try and heal. Thanks to everyone who continues to bring dinner to my kiddos, unpack my new house, organize my garage, watch my kids, and love on me from afar. I couldn’t imagine doing this alone; I’m truly blessed and so grateful to be surrounded by such phenomenal people!

 

~Sarah

 


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