When I was first diagnosed with ALS, I thought I was courageous. I thought I knew what courage was. All that changed when I met the people in the ALS support group. This post is about the different forms of courage I witnessed.
Attending support group meetings is great for many people. Some attend because they need to feel that they are not alone in their journey. Others are seeking to solve problems they are facing that those further along in the disease progression can answer.
A few may enjoy attending for the social aspects and the connections. Perhaps some look forward to attending because they can solve problems for those not as far along in the disease. One person even shared that attending the meetings makes them feel “normal” because in the support group “normal” is living with disease.
Attending support group meetings is great for many people. Some attend because they need to feel that they are not alone in their journey. Others are seeking to solve problems they are facing that those further along in the disease progression can answer.
A few may enjoy attending for the social aspects and the connections. Perhaps some look forward to attending because they can solve problems for those not as far along in the disease. One person even shared that attending the meetings makes them feel “normal” because in the support group “normal” is living with disease.
Whether an individual chooses to attend or chooses not to attend support group, some level of courage is involved. I avoided attending the ALS support group meeting for three and a half years. My wife wanted me to attend so I relented even though I thought it was not in my best interest.
I saw people in wheelchairs unable to communicate without an assistive device. All of them had to attend the meeting with a caregiver; they were not capable of attending alone.
It was a picture of my future. It may have even been a picture of my present situation although I refuse to acknowledge that! I realized I should have had the courage to attend sooner so I could have been an encourager to others but it is not too late!
I saw people in wheelchairs unable to communicate without an assistive device. All of them had to attend the meeting with a caregiver; they were not capable of attending alone.
It was a picture of my future. It may have even been a picture of my present situation although I refuse to acknowledge that! I realized I should have had the courage to attend sooner so I could have been an encourager to others but it is not too late!
I was amazed at the courage of those in attendance who were early on in the disease progression. They had the courage to face their unavoidable future. They methodically gathered facts and suggestions without displaying any sorrow about what their future looked like.
While I admire them for being able to confront their situation head-on, I think that it is a battle that they will have to fight every day. That is why it takes an unfathomable amount of courage!
While I admire them for being able to confront their situation head-on, I think that it is a battle that they will have to fight every day. That is why it takes an unfathomable amount of courage!
I was surprised by how courageous everyone was at the meeting, especially Tom. He has lived with the disease for fourteen years and continues to be amazingly positive while finding joy where he is.
He reminded all of us at the meeting to continue to look forward to our future because we still have good things in our lives – time with family and friends, love, laughter and more.
(This is a picture of me with Tom.)
He reminded all of us at the meeting to continue to look forward to our future because we still have good things in our lives – time with family and friends, love, laughter and more.
(This is a picture of me with Tom.)
I hadn’t given much thought to the courage that the spouses of those living with ALS must have. One woman at the meeting brought up how at each phase of the disease, not only does the patient have to be willing to relinquish control but also the spouse.
For example, when it is time for the patient to transition to a wheelchair fulltime, the spouse has to accept that along with the patient. When I transitioned to the wheelchair, my wife also had to give up her dreams of us hiking, skiing and biking together. Not only was I losing my freedom and mobility, but in a sense, so was she and, for that matter, the entire family. My wife had the courage to accept that and move on.
Each of us exhibits courage every day as we live with the disease choosing to make a difference in the lives of others. Hopefully we each do that by demonstrating, how even in the midst of adversity and suffering, there is joy. Each of us chooses to acknowledge our limitations but then move on and find ways to continue living each day to the fullest.
For example, when it is time for the patient to transition to a wheelchair fulltime, the spouse has to accept that along with the patient. When I transitioned to the wheelchair, my wife also had to give up her dreams of us hiking, skiing and biking together. Not only was I losing my freedom and mobility, but in a sense, so was she and, for that matter, the entire family. My wife had the courage to accept that and move on.
Each of us exhibits courage every day as we live with the disease choosing to make a difference in the lives of others. Hopefully we each do that by demonstrating, how even in the midst of adversity and suffering, there is joy. Each of us chooses to acknowledge our limitations but then move on and find ways to continue living each day to the fullest.
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