Today is the last day of summer vacation before heading back to work tomorrow. As I reflect on my summer I had times of good and bad. It was not what I was dreaming it would be, but because of that, I have learned to be more realistic. I had really big goals and dreams this summer that I thought I would accomplish but I didn’t. I get upset and sad but I pick myself up because that is just the way it is right now. I remember talking to one of my co-workers around Christmas about how my goal for this school year (2017-2018) was to come back to school walking and I thought if I have to use the walker, oh well at least I will be walking. I remember she looked at me and said something along of the lines of if your body isn’t ready for walking by then that is okay. No one here is expecting you to walk you do what your body needs. I was so stubborn because I thought there is no way I can still be like this next year but when she said those words to me it meant a lot. I had support and someone listened. It wasn’t someone telling me what I was doing wrong. These types of conversations don’t happen very often to people with chronic illnesses so we remember those good conversations because they mean a lot more than just a conversation. My dream was that I would be walking this year and I could get rid of the scooter but my reality is I am actually more dependent now on scooters, wheelchairs, walkers. My doctors even had ‘dreams’. I remember the appointment with my local rheumatologist when I had to start using the wheelchair and he told me you won’t be in that for long but as time passed we had to face reality and I started to have to use these things way more to prevent falling and passing out. Same thing with my rheumatologist at Clevland she told us we will get you out of your wheelchair and walking it might take time but I believe I can do that for you. When we went back for our next appointment we again said goodbye to another dream and faced reality. We had even mentioned maybe when I come back for my next appointment I won’t be relying on the wheelchair as much and my doctor just politely smiled and shook her head no. I realized a while ago that the doctors have had to face dreams vs reality with me too. The doctors were sure I would be out of the wheelchair, but months passed with little to no improvement and all the doctors stopped talking about the future with me. That’s scary and sad when I really think about it. Our dream is of course for this to all go away and be walking but the reality is who knows when and if that will happen. Instead of talking about getting out of the wheelchair I am told that I need to rely on these things for my body and my safety; at any age, that is a hard pill to swallow. There are so many dreams I have had to let go of and say goodbye to. I hate admitting it I hate it so much that I have tears streaming down my face as I write this. I should be out with friends, going on dates, driving, living on my own, but that isn’t my reality – those are dreams now. The dreams I once had have changed because my reality did. This summer I didn’t get better like I thought. I was upset and frustrated but it challenged me mentally. This summer I may have not improved but my mindset did (at least I like to think so). I have been trying to come to terms with this is my life right now and I don’t really think about the future. It is so hard to think about the future because my pain changes a lot, so I don’t know how I will feel next month let alone tomorrow. By saying I have come to terms with things is not saying I’m giving up, I am just facing what my reality is. In reality, I will probably be in the wheelchair for another year unless a miracle happens. It is easier for me to come to terms with it instead of what I used to do until this summer. I used to just keep hoping and dreaming and then I would come out of the doctor’s office upset and sad because I wasn’t getting better and my dreams just kept getting crushed. The next day I would be depressed and this cycle kept happening until this summer. I just accepted it. I will get better when I get better. I have to let go of these dreams because it’s making it harder on me. Once I let go of those dreams it has been a little easier mentally for me. Of course, I am devasted that I have had to get rid of these dreams but that’s my reality. I have different dreams now. I found this quote in a book I was reading and it is so true. “Those with chronic pain and illness have to grieve the loss of 2 separate lives. I’ve had to grieve the loss of the person I once was and also grieve the future self that I’d assumed I’d have.” My dreams have changed, of course someday I hope to be walking again and get my ‘old’ life back but that is a big dream. I now dream of the day: I can walk, I can be independent, I can stand without getting dizzy, I can drive, I can see fewer doctors, days of no headaches, and days I am not in any pain. I had to say ‘goodbye’ to the future I thought I would have and dream new dreams. As a kid, you’re always told dream big nothing can stop you. As I am older I realized there are some things that can stop you, but you don’t give up though you can just make new dreams. Everyone always has dreams and I have mine but sometimes I have to ‘forget’ them and focus on the reality of my condition it just makes it that much harder if I keep thinking unrealistically. Its easier said than done but I just try to focus on the now and try not to worry about the future.
Dreams vs Reality
“Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.” Matthew 6:34
**As you may or may not have noticed I have tried to blog at least once a week. My goal is to still try to keep that up but the reality is it might not be once a week as I head back to work and get used to the schedule again. Thanks for understanding. **