When I was first diagnosed with a muscle disease 11 years ago, a friend of mine said, “I’m sure if you really needed to use your legs you could.” She was wrong. Sometimes words are empty. What we really should be doing is being respectful, honoring the person’s emotions that is going through a life changing event in their life.
At that time I used my scooter and wheelchair to do almost everything. If I did too much I could not move for days.
A few years ago I started my own plan. I was told no PT would help me. I was diagnosed with Central Core Disease because of the core formations in my type 1 muscle fibers. After being studied by doctors all over the world it was decided that WHATEVER I have it does not fit the typical Central Core Disease criteria. They tested my blood for the known mutation that causes this disease and it was not there. I am currently having my DNA tested by a research scientist, determined after all of these years to find what gene has caused this to happen to my body. If he finds it and we can solidify my diagnosis then when a cure becomes available, or even a treatment, then I can try it. Better yet, if he finds what is wrong with me it can help diagnose all of the undiagnosed! Imagine who it could help!
I have watched as my left leg has atrophied away. I have suffered unbearable pain and weakness. I live in constant pain due to the atrophy of my right shoulder and trapezius muscle.
I CHOSE TO DO SOMETHING. I was losing anyway. So I started slowly and simply. One room I would sweep. Once a week. I worked my way up to the entire house. I worked my way up to laundry, cooking, and walking around the house without the use of my scooter at all. The consequences are pain. Constant pain. But I have built strength that no one said I could. Even though I atrophy I still have strength. I have had many Doctor tell me that I should not be able to use my left leg at all, yet I do. I used this year to build up strength driving. It used to take me a week to recover from one mile. Now it takes an hour.
I drive to the prairie to watch the sunset. Once I get somewhere it is hard to then walk. The conversation in our family has opened up to us getting a lift for the car so that IF I drive I can use my scooter when I get there. I know balance. I rest. I use my wheelchair when outside always or at doctor visits or anything that takes more than 100 steps.
11 years ago I could not have driven to the prairie, swept the house, or done any of the things I can do now without severe injury. Perseverance has made me capable of those things.
It is an insensitive sentence to say to a person with a disease that I am sure you can do it if you really needed to. I worked very hard to get here. Slowly, methodically, and balanced. AND I have no idea how long my body will let me keep doing it. No one does. So I keep trying to LIVE and take my little happy pictures to balance out the pain of the other parts of my life.
While my husband was out of town I had to drive my daughter to the doctor. It was 5 miles more than I was used to and when I got there, I had no scooter to get me in the door. I did it. I had had a mental block over going over certain miles. I knew that. I count my steps. I know I can make it 100 steps before I get tired. When I got her to the appointment I didn’t count my steps. I just listened to my body. If I couldn’t drive home I would have had to call someone to help me. That day allowed me to see how far I have come and how long it took me to get here with a great amount of patience.
These past few weeks I drove the car to the mechanic to get the AC fixed.
Last week I drove my daughter to another appointment.
None of this is not without repercussions. I know that the pain will be excruciating. I know that over using my body affects my bladder control (not part of the supposed disease but nothing I have is part of this disease).
A few days ago the well went out. I met the well man to have him fix the well only to realize after that our septic system had also failed. I met the septic system man. I made it through all of these mechanics, well guys, septic guys, doctor appointments, etc. The septic tank man sent another man to pump out our whole system. He was supposed to just come to the house and pump it out.
We couldn’t use the water for that day. I had overdone with driving and with all of these extenuating circumstances of house breakdowns. So, I lost control of my bladder. I woke up knowing that I could not use the water, soaked in my own urine with at least 4 loads of laundry to do of urine soaked sheets and blankets.
When the man came to pump the tank, he knocked on the front door instead I suppose to announce he was here. I opened the front door and he was smoking a cigarette and my whole entrance way was full of smoke. I cannot be anywhere near cigarette smoke for health reasons and mental health reasons. I froze. I couldn’t move. Everything went into slow motion. In slow motion I closed the door on the man. With a very shaky voice I called and said I could not be around smoke so just pump the system out. I’m barely standing, covered in urine, waiting for him to pump that tank so I can shower.
This is the truth of muscle disease. It is not easy. None of it easy. It is embarrassing, humiliating, vulnerable. I CAN push through some days. Some days I cannot do anything.
Standing there frozen with a cigarette man…That “freeze” is common with PTSD.
When my friend told me even with a muscle disease I could still do it if I tried hard enough would be just like someone saying I could have done ANYTHING different when I froze as that man stood at my front door.
We all have challenges. Some serious. Some traumatic. Some involving our body. Some involving our mind.
I often feel that no one really can imagine the loneliness, the isolation, the pain, the loss. Yet, I know others have experienced even worse. They get up every day and move forward.
Today, I thought of the effort I have made in driving out of necessity. Today, I wanted to drive because I wanted to do something important to me. I thought long and hard about my life’s circumstances and I thought about the depths of loss others have felt far worse. Just last week two police officers were killed in a county close to us. I read another blogger/friend had an officer killed in her county last week too. I cannot imagine what that kind of loss feels like to those who love them when it hurts me to my core and I don’t even know them. There have been many who have lost loved ones in tragic accidents and heinous murders. There was a young girl murdered in our town a few years ago that stays on my heart daily still.
Today, I wanted to drive for them and walk for them. I wanted to do something to honor those who have lost their lives.
I drove to the 34th street graffiti wall. It is a wall in our town where you are allowed to paint, put up a mural, memorial, advertisements, etc.
I drove there and parked in a complex across the road. I waited a very long time until there was not traffic to be able to walk across 6 lanes of traffic to get to the wall. I planned the whole trip. I have no idea how many steps it took to get across 6 lanes of traffic but I will admit, even though there were no cars I was a little bit afraid. I wanted to get to the memorial part of the wall. There is a memorial there from 1990 when 5 precious souls were killed. That wall has been painted over hundreds of times since that date. Not once have I seen this memorial gone. I wanted to put my hand on that wall and take a moment, to use my legs in honor of those who had lost their lives.
I know my gesture may not mean much to others. It was not one anyone will even know about other than those reading this.
I know with the abuse I endured, the PTSD suffering, this muscle disease, my life has its serious struggles. I have chosen to use the parts of my mind that remain strong to channel into strengthening what is left of this body. I know that parts of my body may fail. My mind is a more challenging fight. I can’t push through that. Trauma has a life of it’s own. I cannot even imagine the trauma of losing someone I loved to murder.
That’s what made me think of those who have lost a loved one. I thought of the pain they are enduring. How some things you just can’t fight through. You just have to feel. And feeling is sometimes torturous. It can be excruciating. I feel so deeply for those at home right now feeling that loss. I wanted to do SOMETHING to honor those fallen lives, those taken lives, those precious lives and the ones left behind.
I want you all to know, those law enforcement officers’ family and friends…those who have lost their lives in devastating and tragic ways….those innocent victims whose lives were cut short by criminals…I REMEMBER. And today, I spent the day honoring all of those losses. Some who have lost loved ones may feel alone, right now, right this moment. You may think oh everyone is just going on with their lives. I didn’t. I stopped. Your loved one was honored by me for I am sure is just a drop in the ocean of the lifetime of sadness you may feel. Just know someone out in this world is thinking of you and that loss. Your loved one, mattered, matters, to me and I honor them.