May is deemed ALS Awareness Month. When I first met Mike, I had only a vague idea of what ALS was. I looked it up. I knew what I saw, I saw a man paralyzed, unable to breathe, unable to talk, who was still so engaging, so full of life that I was drawn to him.
I'll get real on awareness, so much more than what you see..... In 2 years of living together, I can count on one hand the number of times he had anyone visit. This man who was so well loved and so active, a man who had thousands of friends (according to facebook) rarely had anyone come say hello. Why?.... most of the time I never asked. It made people uncomfortable to ask them outright, why do you promise all these things for the world of Facebook to see, yet you do nothing? Why all the offers of help and yet no one helping? Why all the fundraisers and money raised in your name and yet nothing spent on your needs?
After Mike died, I had a strange number of people contacting me asking me if I could talk and do what I could to help, people they knew and had come across who had been diagnosed with ALS... this supposed rare disease. One woman stands out. Her husband had been diagnosed not long ago and he already had lost a lot of his ability to care for himself. I called her, not even knowing what to say really. I let her talk, I heard her saying all the things I had felt with caring for Mike. I listened to her telling a complete stranger...me....how much she hurt on a daily basis. How the county caseworkers all told her the same thing... we are working on it, we will get back to you. I could hear her reluctance to ask for help. I knew that feeling too, you have asked so many time before with no help being given, that you don't even have the will or energy to ask again. By the time we hung up the phone, I told her I would meet with her caseworker with her. Sometimes it is a real help to someone to not stand there alone, to have someone with you to hold people accountable to do the things they should be doing. I was waiting to hear from her to tell me when the appointment was scheduled. The next time I heard from her was when she sent me a message telling me that her husband was dead. I could hear the guilty mixture of grief and relief. I knew it well.
That's the reality of this disease.
Mike never got the help he was lead to believe he would get from all the money that his friends had raised to help him. He didn't get the hallway widened so that he could come into the livingroom with us. He didn't get the ramp out his door so that he could sit outside. He didn't get the lift van so he could get to doctor appointments. But the worst of it was when he couldn't get anyone here to help me care for him. The Trust he had had paid for an aide to sit with him in the nursing home when he felt that he was at risk for retaliation, but when we could no longer get an agency to take on his care, they wouldn't pay for an aide to help me here at home.
Here is another reality of this disease, it's messy, it's stinky, it strips you of your dignity. Mike had to watch me, helpless, struggle to care for him. He knew how hard it was to hold his 6'3" body on his side with one hand while I cleaned his backside and stripped his bedsheets with the other hand. He knew. He sent an email to his friends begging for help. Begging.... the man who had thousands of friends who offered to help all the time and yet he had to beg for help for his girlfriend. There goes his dignity yet again.
These friends are still raising money in his name. There is still a fund out there now giving money, a lot of money, to other football players with neurological disease. As well intentioned as the people giving the money are, I often wonder if they know that when Mike needed help the most with these funds, he didn't get them.
I don't think people know the reality of what faces most people diagnosed with ALS.... you may know on a cognitive level what happens, but does anyone realize how many thousands of people there are who chose to die simply because they don't have the money? They don't want to drain all the resources for their family. They don't even have a way of communicating anymore. They still want to be a part of the lives of their friends and family and yet piece by piece as they lose their physical abilities, they lose their friends and family. They chose to die not because they can't take the hardship of what the disease does to them physically, but because of what it does to them mentally.
Mike was strong, Mike was resilient, Mike was exceptional, Mike was forgiving, Mike was hopeful..... Mike wanted to live even with everything he had lost. He wanted to still be a positive part of the existence of all of us.
So my effort in recognizing this Awareness Month is meant to ask you all to remember Mike by helping someone. Doesn't even need to be ALS related. But don't just offer to help.... do it. It's easy to give money (when you have it), but DO something. Show up, be present, be a witness to the lives of others and give them the gift of knowing they matter. We all know people struggling, don't just type encouraging words on Facebook, don't be afraid of seeing their pain. Mike wanted fellowship. Give that.
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