Living with a "slow progressing" form of ALS, I am considered one of the lucky ones. I try my best to be grateful for what I do have, instead of resentful of what I can no longer do. When others see me they see a positive person, an ALS Ambassador with a great attitude, brave and strong. That is the side I let you see.
There is another side. One that lives in terror of what is to come. One who cannot bear to lose control. One who gets jealous of people dashing into the store, while she waits in the car. One who wishes she had at least 10 more years pre ALS without knowing what was coming. One who bears the burden of watching countless others with ALS die, when they were diagnosed after she was. One who is suffering. One who feels like a coward, and a fake because she doesn't let anyone see that side of her.
Anyone but her loving husband that is. He sees and knows all sides of her. He watches as his wife slowly loses all parts of herself. He is by her side as she cries in desperation, devastated that because she is living too long he will only remember his sick wife when she dies, and not the woman he married. So he doesn't talk about his suffering. He must be "strong" for her.
The week before Easter was a living hell for both Travis and I. It did not come on unexpectedly, things had been slowly slipping for months. While acknowledging that things were difficult, we thought we were doing the best we could, but no, we were both far from it. Within the same week, we both ended up in hospital.
The best way I can describe what happened, is that after living with ALS for 6 years, the weight became too heavy to bear, and we both broke.
People were shocked. Nobody knew, many imagined, but we put on a good front, until we could no longer hide what was happening behind closed doors. Depression. Both of us. But not together, we were suffering alongside each other, but ultimately alone.
We have figured out that we cannot only rely on each other. We needed help. We were drowning and pulling each other under instead of rescuing each other. We were each other's everything, but we could not be each other's everything.
I know I'm not alone. In Jenni Berebitsky's book "ALS Saved My Life...until it didn't" (reviewed in a previous blog post), she mentions though grateful for outliving her prognosis (2 years, she has lived with ALS for 9 years now) there are times when she thinks, "Can we speed this up? How much longer do I have to endure?".
Travis and I survived and were taught a lesson. We have accepted help. It is not fun. It is hard work. Recovery is a full time job. Both of us are now receiving care in many forms; friends, family and professionally.
We are rising up, being lifted by those whose job it is to help. It is not a passive process. We have to engage, participate and accept that we cannot bear this weight alone.
We know that we will be better for it. Instead of living in a depressive fog, we are committed to working through our pain and fear in order to embrace the rest of what our lives have to offer.