Where God has me

 At home to do list:

Take care of myself

Take care of my husband

Take care of my dog

Spend time with God

Don’t kill myself

 

So, at 27, life is different than expected.

                    When I was in middle school, I wrote out the plan for my life. Go to college at 18. Graduate at 22. Get my masters degree right after. Get married at 24. Make a lot of money. Travel to tropical places. Own a big house, with an observatory, puppy room, and a library. No kids. Of that list, some things have happened. I did get married at 24 and I did go to college at 18.

But, I never got my Bachelors or Masters. Instead, I got Guillain Barre Syndrome at 19 years old and became paralyzed in my legs and arms. I spent 5 days in the hospital and a year in recovery. Why did it happen? Why did it happen to me? I had asked God this often, fueled with anger at His “betrayal”. I was very faithful to my church and so to God, I thought, so why would God allow me to become sick and paralyzed?

I couldn’t drive, work, attend school, or function normally at all. Everything was exhausting for me. I fainted often. I remember the joy I felt and tears I cried when I was finally able to brush my hair alone for the first time in weeks. Not able to shower of course, but only sit down in the bathtub. Why was this happening to me, at 19?

Now, here I am 27, and my attitude is different. Life is different. I never fully recovered from that paralysis event at 19. For the years following, whenever I would undergo a great amount of stress, I would lose feeling in my arms and legs and pass out not long after. I didn’t know what was happening to me.

After years of doctor’s appointments and attempts to figure out what was happening, I learned I unfortunately had a plethora of health conditions that would disable me possibly forever. At 27, I have accepted that they really are for forever.

I have ME/CFS, which is a genetic fatigue syndrome that exhausts me horribly. Doing the dishes one day could be fine, but another day could knock me down for several hours after. Or days after.

POTS keeps me constantly dizzy, lightheaded, makes my heart pound painfully in my chest, and causes me to faint if I stand for too long, which could be 10 seconds or 10 minutes.

 MCAS makes it so every mast cell in my body responds to every little thing in life like it is an attack, an allergic reaction to even light and sound spreads throughout my body and I am on the floor, filled with pain.

Fibromyalgia surges through my body and causes constant pain throughout. Dying feels like the right idea when these conditions flare, but it’s not what the next right thing is, not to me.

How does one plan life around this? How do I work? How do I find joy? How do I find a reason to keep going? I feel like God knew I would need reasons to keep going, so He gave me my dog and my husband. He gave me friends, a supportive Church, a love for sewing.

For me, health challenge after health challenge causes life to keep going downward. Eight years so far of being disabled, with three surgeries in two years, and two near-death experiences in one month. But, I know that there is a meaning in it all. I have a reason to be here and a reason to live.

I don’t always know what is happening. I don’t get how weekly migraines, severe pain, and a static lifestyle are good in anyway, but I know I am not alone in my suffering. Somewhere else, close-by even, another disabled person is suffering too. As I look for meaning in this hell, another disabled person wonders if life is worth it too. So I wanted to tell that person and tell myself too: Living life is worth it. There are people and events and moments that make life worth it. I cling to those. I wouldn’t be here otherwise.

I bled out on the floor of my home and lived. My intestines shut down and I lived. I had my perfectly written life plan ripped away from me and I have continued to live. Life is not in planning, life is continuing. Continuing always until it truly is the natural end of things. And I want to enjoy life as much as I can.