My mom took me to one of my appointments yesterday. She is driving down the street and all my senses are overwhelmed. Flashing colors. People. Scents. Movement. Life…it’s a total sensory overload from my 65+ days in bed. I am shocked to see that the trees lining the street have leaves of bright shimmery yellows and golds. The grass is covered in a soft confetti of color, it's one of my favorite times of year. The air is unseasonably hot for this time of year, but there is a slight fragrance of autumn. I see my neighbors in a whirl wind of motion and sound little feet running, bikes whizzing past, giggles, voices, and dogs barking-sounds.
How did this happen? Where did the time go? The last day I was over here it was July and we were splashing at the pool. Just Johnny and I playing together...me being his mommy...doing what mommy's and son's do together. Just living life. My life--things felt perfect.
Where did the summer go? Where did my August and September go, and can it actually be true that it’s almost October? I just missed those days, those weeks and now months-it feels like it all happened without me. But, that’s not true…I was there and many of those seconds, minutes and days felt like a lifetime. A tinge of jealously mixed with anger and sadness comes over me. I realize just how difficult it has been to “watch” everyone else just go on about their lives. It’s very hard not to mourn the life you didn’t have, especially when it comes to Johnny and there is nothing I can do about it. I feel helpless on so many levels…and I am and I am not. Every day I feel helpless simply based on the fact that I cannot take care of my basic needs. I feel the desperation frequently of a little child who depends on their parents for everything to survive. I should be that parent, but instead I have been playing the role of that child. Many days I feel worthless-it’s pretty impossible to put into words. One day I will take one step forward only to fall 50 feet back the next day. I have felt like a human pin cushion, a medical mystery….just damaged and defective.
I felt myself falling deeper and deeper into this isolation and depression. It’s so easy to tell someone that this is temporary and everything will be ok. Everything is ok unless it’s you going through it. Even then, I have always found a way to make it ok in my life even when it wasn’t. It wasn’t, but it WILL be...and I needed to accept that while pushing through this with everything I had even when my body gave up. It’s easy to tell someone to just cheer up…when the person saying it is the one who is happy. A lot of people don’t realize that most people with chronic or severe illness can and do experience some form of depression. I have friends that tell me that they wouldn’t last a week stuck in bed…but it’s amazing what the body and mind are capable of. You push through, because you have no other choice.
Imagine what it would feel like if your brain stopped sending correct messages to your body…your heart rate turned into a horse that had just escaped. You push through when you really just want to give up because you know what you’re fighting for. There have literally been moments when I have pushed through just by picturing being able to sit outside on the porch swing again. I am drenched in sweat, covered in vomit feeling like I am being poisoned and have the worst hangover in the world. I’m picturing actually being able to SEE that contagious beautiful laughter that I can often hear from up in my bed. I’m imagining our family at the park and the dogs running, I’m seeing myself being able to stand. I’m in some of the worst pain of my life my whole body is on fire…my brain misfiring and sending my nerves the wrong messages. It feels like I am caught on fire and the pain is imaginable. I want to die…I don’t think I can go through this. I can’t control my thoughts anymore, the pain has totally taken over. I am sure this is it, and that I am dying…and if I’m not I’m almost wishing I was. I don’t want to live through this misery anymore…see Johnny’s face in my mind and keep pushing through. I tell myself that Johnny needs him mommy and that is how I push through. 65+ days of this hell.
I have been seeing a lot of specialists and haven’t been in an ambulance in over a week…so we are making progress but it’s still very difficult. It’s amazing what we take for granted. I can’t tell you what I would give just to be able to sit upright in a chair like you are probably doing while reading this. One day I will get there. I can honestly tell you now that I am blessed, I am lucky to be alive and I have a lot to be grateful for. I really believe that the best medication is hope and that life is not about what happens to us but rather about how we react in those situations. That doesn’t mean that you walk around in rose colored glasses and pretend that everything is ok when it’s not…but it means that you try. As little kids we are taught to keep trying and to never give up but as adults we throw our arms up in the simplest of situations and walk away. It doesn’t mean that I am going to be happy about the misery I am going through, it’s doesn’t mean that I am not going to be jealous at times or crushed that I can’t be with my son and husband…but it means that I will try everyday to do what I can. That’s all any of us can do anyways, right?