To Be Surrounded by People, Yet be Totally Alone

Learning You Have NMO (Or Any Disease Really) is not easy. I recently read an article that I found fit perfectly with the way I have felt at one point or another during my journey …

First off the article started with a statement that I have taken and put to NMO:

“I heard the doctor say, ‘I’m sorry; the test results show that you have NMO.’ I heard nothing else. My mind went blank, and then I kept thinking, ‘No, there must be some mistake.'”

Okay … so this statement more than likely came after rigorous testing and more than likely after one or more attacks that have left you disabled either visually or physically …. And with this diagnosis comes a flood of feelings which include (but are not limited to):

  • Hope
  • Denial
  • Anger
  • Fear
  • Worry
  • Stress
  • Pain
  • Loss of Control
  • Loss of Self Esteem
  • Sadness
  • Depression
  • Guilt
  • Loneliness
  • And Gratitude.

So, looking at all of these feelings I want to focus on at least one of these feelings each day this week. So I will be posting one blog post per day or at least try to that deal with one of the above feelings.

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Today’s post will focus on Loneliness with NMO and in particular how my family and support group makes me feel.

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First off … I know my blog is public so anyone can see it. But this post is very important to me and I don’t much care who sees it or who gets offended though it’s not meant to be offending at all.

Each and every time I have had a flair be it TM or ON one thing has remained constant and that is the people that stand tall beside me. The people who make a point to be there and at my side and those that shrink into that background and though you know they love and care for you are either too scared to remain faithfully at your side or maybe they don’t care like they say?

In 2006, I had my first and only transverse myelitis attack. I was scared as hell. I remember it like it was yesterday. It was June 29th – the day before my 18th birthday! I was working with my parents and siblings doing yardwork at the place we were preparing to move into (in the end we didn’t) anyway, we were cleaning up and it was hot out. It was June right? And June in PA is HOT! So, I was working pulling weeds from around the cabin when my right arm went tingly all over. Knowing maybe I was too hot I sat down to cool off and got a drink. I remember sitting there on a log that my brother had chopped and yelling for my parents. I couldn’t feel anything on my entire right side. I remember screaming and crying. I had no clue what was going on. It was like my whole side was heavy as lead. I couldn’t move anything and I couldn’t feel anything. My family rushed me to the hospital fearing a stroke (it was really hot) – many tests later (and you can see my first post) it turned out to be TM. Anyway, the point of this was that …. During that first attack I was in the hospital for over a month getting steroids through the IV and physical therapy. And you know what I had … family that stood beside me. Not just my mom and dad and brother and sister, though they were like rocks for me back then. But I had daily visitors – someone from my family came to sit with me or visit me, be it my gram and pap my other gram … aunt’s and uncle’s …. Lots of visitors and people that cared for me. My little cousins drew me cards and brought me balloons … lots of family and people around me.

As the years have gone by things began to change. People didn’t stick around … they drifted away … and I am not one to play the disabled card at all. I don’t even have a disability placard for the car so I can park close to the store … even when I am sick I would rather walk that distance as I feel someone out there is more disabled than me that needs to be closer …. But I digress.

What I noticed this last time I was in the hospital … people were not my constants. Since I have come home they are not my constants. And I wonder why? Do people drift away from you when you get sick? Why do they hover when you first become ill but drift away and act ‘noncaring’ when you come home or become ill? Are they afraid or just busy? Do they just not care?

Lately, I have felt that it was the latter. In fact, other than my parents and siblings and grandparents …. I feel very uncared for by my family. And if you are reading this, well maybe it’ll serve as a wakeup … but mainly I am writing this to let others with NMO know that they are not alone.

I began to notice this while I was in the hospital this last time for my fourteen day stay. I was stuck at a hospital that is over an hour from my house so my parents couldn’t come every day … and I noticed a big big big thing. It seems that my NMO Family (people who have NMO or whose loved ones have NMO) are more compassionate and caring than my blood relatives. Sure, they couldn’t be there in person but I got phone calls and gifts, emails and cards, flowers and fruit baskets …. So much. I had messages from them every day wishing me well and to get better … these people, these amazing wonderful people …. Some of whom that I have never even met in person were showing me more compassion and love and understanding and care than my own blood relatives.

It’s not even that I was asking for my family to buy things … but they could pick up the phone and call and see how I was doing. They could have emailed me or posted ‘get well’ on my wall on facebook. Anything … and yet they didn’t. I am so frustrated by this. They expect you to drop everything and run if they need something but they can’t even take five seconds to call and say “Hey Heather. How are you doing today?” Granted I had a few family members that called or emailed. An aunt that lives out of state the whole way in Georgia called me every night to check on me. My uncle that lives Oklahoma called me twice a day to check in …. Another Uncle called me and checked in. And of course my grams both came to visit me. And my cousin who worked in the food department came to see me before or after each of her shifts and sat and talked and then delivered my food when I ordered it so I saw her. But that is it really.

Now I have a very very large family compared to most. My grandma on my mom’s side had twenty one brothers and sisters. So you think … there are a lot of people in my family. My gram though had five kids and each of those kids are still alive and well … and they have kids and their kids all have kids that I love to death. Yet, no cards no notes of love …. And it kind of breaks my heart.

This is where my whole rant is leading … I feel as though I am closer to my NMO family than I am to my own blood. I am able to talk to them about anything and they treat me as though I am one of them. We are brothers and sisters, aunts and uncles, grandmas and grandpas … and we aren’t even blood related. I had more friends reach out to me than I had family. I had calls the whole way from Italy … calls from California where we were on the phone for what seemed like hours just chatting about life and our diseases and what we are experiencing. I got arrangements to the point I was sending them home with my parents because I was running out of room …. And all from a group of people that I consider more family at times than my own.

Are all diseases like this? Maybe it’s because we all have a support group online and share horror stories and stories that make you cry or smile. We listen to each other’s gripes and moans. We listen to the good things too like marriages, babies, holidays, etc. We are an amazing group of people that support each other and I am so thankful to have them. It’s no problem to hop online and find someone that has experienced what you are experiencing and get answers or even just a hug (even if it is a virtual hug) and prayers.

Like on “The Fault in our Stars” … she goes to a support group each week and finds a group of friends among those that go to support group. While we aren’t meeting in a basement with snacks set out sitting in a circle in the heart of jesus we are able to come together online (the miracle of the world being able to have a support group you can reach someone through day or night from the comfort of your bed). You grow close to those that you share your stories with. So close that you feel they know you better than some others that you are close to. Yes, we have Patient Days where we can meet others with the same disease in person. This year they are all over the US with one happening this weekend. You can go and meet these people that have NMO and put faces to the names. You can get an actual hug from someone you have been speaking to. You can meet those that have been letting you lean on them for support via the support groups.

These people become like family … which is where I make my point. I have grown so close to some members that I feel like they actually are my family and they know more about me than my flesh and blood relatives. Is that a bad thing? I know many of us feel the same way. Should I feel like this? How do you explain to people that they are making you feel like this? Well, honestly, this is probably the best way I know how …. Write a blog post and hope they read it? It’s certainly the fastest way and the least painful. Knowing my family though they will freak out and demand I take it down … but you can’t take down something that is meant for the world to see … now can you?

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“Every day may not be good, but there is something good in every day!“

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