How I'm Happy in the Depths of Sickness

So often we focus on what chronic illness has taken away from us. It torches relationships, work, hobbies. We lose our sense of self and disease forces us to redefine our lives. It’s exhausting, devastating, the grief can be all consuming.

Today though, I want to focus on what I have been given. It’s important for mental health to occasionally look at the positive.

And I’d like to start with my children. My kids have watched as their mother fell ill, spending more time in bed and less time with them. They have watched as their brother struggles to live (he has Krabbe disease) for years. I’ve seen children turn inwards when life gets hard, and they can become aggressive and anxious because they don’t know what to do and they don’t understand. My kids haven’t though. All of them are growing into kind, compassionate human beings. They are the first to help a person who is down and they can see anyone’s pain. They want to be there for a lonely friend and have kind words for strangers. They understand when people are hurting both physically and mentally. I will forever be in awe of my children as they turn their situation into a platform to help fellow humans.

Chronic illness has taught my husband and I what is really important in a relationship. We both use to be very on-the-go people. We spent little time together. It was work, kids, and sleep. That was it. Then I got sick and stopped working. Then our son was born and my husband stopped working. We learned quickly that we don’t need a big house, our children don’t need fancy clothes and the newest toys. We just need to be together. While we are in the depths of sickness, we are happy, because we are together as a family.

I’ve been given more time to write. I’ve been writing novels since I was a little girl but as I got older I had less and less time to work on my craft. While in the prime of my life I didn’t write at all. There were plenty of ideas floating around but no time to put them down on paper. Now I spend a lot of time in bed so I am able to plug in some good music and scribble away. I recently started getting my first book out to agents and I couldn’t be happier. I have been able to create amazing characters that I have fallen in love with. This book means the world to me and I can’t wait for the world to also fall madly in love with the characters.

Chronic illness, and having a sick child, have taught me perseverance. I never give up. Every day I fight to get out of bed. I struggle to accomplish daily tasks and I drag myself tooth and nail to the finish line. I’m also constantly looking for treatment. I’ve tried every supplement, every medication, every therapy and when they fail I move onto the next thing without skipping a beat. I’m constantly researching for both myself and my son, looking for anything to help. While there is no cure for any of the numerous illnesses in the house, I am determined to find help controlling symptoms. There is no giving up, there is something out there. This also translates into helping people I know. I love researching ideas to help a friend with a medical issue – and researching also takes my mind off things.

I have learned advocacy. I use to just roll over and go with whatever people said. When my postural orthostatic tachycardia syndrome (POTS) symptoms began in high school I was told by a doctor that I couldn’t handle stress. I took it and spent years blaming myself for feeling so awful. When I couldn’t handle it anymore I spoke up to my new doctor (at age 30) and I spoke loudly. I demanded to be heard and taken seriously, and I was. I was diagnosed very quickly because I spoke up for myself. I’m also very outspoken about care for my child. Our local hospital doesn’t even know my name – they just call me Momma Bear.

I am more in tune with my body. I focus heavily on what my body is telling me that it needs, whether it’s fluids, rest, a walk, or medication. Everything is a careful balancing act and every minute of every day I am in a dialogue with my inner workings. If I don’t listen my migraines, fibromyalgia, POTS, and other various issues come screaming at me so I try to be careful to pay attention – but we all have those days where we think we can do everything. I use to push myself until I couldn’t move, but now I work with my body instead of against it.

Lastly, I’ve learned to appreciate the little things. Everyone focuses on the big picture, when really it’s the smaller things in life that bring the greatest joy. Don’t get me wrong, the big things are important, but the little things are what keeps you going. I now truly appreciate kind words from a friend, cuddles from the cats, my favorite Beatles shirt, and a flower from my daughter. These things give me the drive to go forward in my future.

It’s so easy to focus on what has been taken, but remember, if you look hard enough you can find some gifts too.

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