The word "brutal" describes my life and that of my spouse over the last two years. However, when we have attempted to say how bad things are, it does not resonate with anyone because we do not look the part of two people slogging through the hardest years of their lives.
We are moving back home next month after a little over two years since we started our home remodel in late 2020 and moved out to our temporary home, GRACIOUSLY provided by my father, on February 6, 2021. We consider ourselves LUCKY, and we have had a TON of HELP from more than a few people, so we are GRATEFUL, but we do not want those feelings to overshadow the full experience.
- BRUTAL: I continue to decline physically, and at this point, I have lost about 60-75% of my ability to physically function as a "normal" human. It is hard for everyone, including me, to understand that there is nothing more I can do to help myself over everything I already do, which is OVERWHELMING.
- BRUTAL: I am living in my childhood home at this time. Amazingly, we have a wonderful free place to stay, BUT this house was not designed for someone with my severe level of disability. For example, I have to do the funkiest maneuvering to get into the bathroom. I can still get out of my wheelchair by using a doorframe, table, or other affixed or heavy objects to pull myself out of my chair, but my legs will not bend, so I drag myself through the bathroom doorframe to the toilet all day, every day.
- BRUTAL: By choice, due to how hard getting dressed and out of the house is for me, my spouse, and anyone within earshot, I only go out once a week at most, but typically not for weeks at a time. I live in three main rooms of the house because those are the only places I can get myself to and get about 50% comfortable. I wish I had not taken comfort and rest for granted because I no longer experience those two things.
- BRUTAL: Laying in bed is a huge challenge. I can only sleep on my sides now and need help to roll over, so whenever I wake up and need to move, I have to wake Steven up to help. We have been sleeping on an air mattress for two years, so I hope a regular bed with a frame will allow me to move without help.
- BRUTAL: The other 105 things I will not write about.
I have the ability to cope beyond my understanding, so I am hanging tough mentally. I found that I have many interests and pursue intellectual growth to fill my time when I must remain in place, and my amazing spouse has made sure he has his outlets as well.
Our marriage and relationship with my father have grown positively, and so many people have been beyond kind and generous to us, so if there is a silver lining, it's YOU, the people that helped us and made sure we did not drop off the face of the earth.
Life should be easier in our home that was already accessible to me before the remodel, and that is our hope.
Making Life's Hardships Look Like a Cinch
