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.  

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 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!  

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.) 

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.

I debated about writing this post.  It is inspired by a very personal incident; something I would prefer to keep secret between my wife and me. 

 I am writing about it because when I went through it I felt embarrassed and alone.  I realized perhaps I could make a difference for other people who may experience similar awkward situations.

Let me tell you what happened.  I have ALS and it kills my muscles.  In the beginning, my legs and arms were affected first weakened by the disease and eventually rendered virtually useless by it. 

I expected that; however, I didn’t expect it would affect the muscles below my waist which leads me to my story.  It was Saturday morning so Laura was taking care of me.  I was in bed when I felt an urge to go to the bathroom.  I told Laura that she had plenty of time to get me to the bathroom.  I was wrong! Terribly wrong!  My body betrayed me and I went to the bathroom in my bed.  I was mortified! 

Laura had to clean me up.  All the while I was feeling so humiliated; I could not stop crying.  I was watching Laura calmly clean up the mess that I made and thinking this is not how things are supposed to be.  I thought that later in life, I would be taking care of her!  I felt all alone.  I felt helpless.  I felt defeated.  

Laura said, ”This is no big deal.  I did this with our children.” Then she wiped away my tears.  After she cleaned me up, I felt really uncomfortable because she put a diaper on me.  

Let me tell you what went through my mind.  Thoughts of control and power went through my mind.  I have been a manager of other people. I helped many people and they depended on me. I have reached a point where I have lost all control and all power.  

Right now, I was not anything to anyone.  I have had enough humbling! 

Then Laura asked me, “What are you thinking?”  I told her, “I’m done!” as in, I am ready to check out.  Then she made me laugh.  Imagine that!  She made me laugh by saying, “Remember, ALS is going to take your life by taking away your breathing; pooping is not going to be the end of you.” 

I laughed.  Laughing softened the moment, and the more I thought about it, I realized I had not done anything to be embarrassed about.  Embarrassment should be reserved for those moments of bad judgment when you could control what you did or said but there is no cause for embarrassment when something is out of your control.  I am doing the best I can.  All of us are doing the best we can.   

I am sharing this story because, while it is quite personal, I don’t want you to ever feel embarrassed and alone in your suffering.  No matter what you are walking through, someone has walked that same path before you and others are sure to follow.  

The Enemy always wants to isolate us so we feel alone. It is important that we share our experiences to let others know that we are not alone.

This post is for all the caregivers out there especially when the caregiver is a family member.  When someone is disabled, all family members are caregivers.

When my family members meet a friend, the first inquiry is generally not about them, but rather, they are asked, “How’s your dad?” or “How’s Akhil?” I appreciate everyone’s concern, however, if I put myself in my family members’ shoes, I would feel marginalized. 

 Even though my family members are not expressing this feeling, I can only imagine that this is the case.  This post is designed to address this situation.

I am finding that many well-meaning people focus on my well-being but forget that there is a whole team of people that are responsible for how well I am doing.  They rarely get the recognition they deserve for all the effort they put into my care.  I think it would be appropriate for people to find out how the family members are feeling about the situation.  I recognize that this may be an uncomfortable topic for some to broach so for those people, a simple, “And how are YOU doing?” would be sufficient.

When I realized I would no longer be able to work, I asked Laura, “What are some of your biggest concerns?” I was surprised at her response.  I expected her to talk about her financial future but she said that the only thing she wanted was for me to get better. 

She wanted to focus on using the rest of the time with me making happy memories.  She was saying things to make me feel good about my “retirement” but I have been married to her for a long time and I know her. I knew she was worried about taking care of the family when I am gone.  I also knew that she did not want to burden me with that responsibility.  I have a good wife, a good warrior who works in the background to support me. 

This brings me back to the point I was making.  Even though Laura looks like she has it all figured out, she struggles at times. Don’t get me wrong, Laura doesn’t live in fear; she is pragmatic and she has put together a plan for taking care of the family when I’m gone.  If you ask me, she has a lot on her shoulders.  

By the way, every family that is dealing with a difficult situation like this, has a member of the family shouldering the load.  That is why I am asking you to stop and ask about how the family is doing.  Ask about how they are handling the challenging situation in their life.  Recognize their heroism.

There is a lot of stress involved in caring for a disabled family member.  In order to temporarily escape this stress, my family likes to travel.  When my family wanted to go on vacation without me, some people tried to make them feel guilty about that. 

People may not understand that I want my family to have time to relax and forget what is happening at home.  Many of you may have a stressful job that you can’t wait to leave behind for the weekend or a financial stress that you can’t seem to escape. 
 
I am sure every human can relate to the need to get away from something!  My family is no different; every hero needs to recharge so they can continue in the war.  I hope if you are reading this and are disabled that you will give your family members permission to get away.  

In summary, everything is not as it appears.  Any family dealing with a challenge like mine, needs people to stand alongside them and offer support. 

So pick up the phone, write an email, go over and visit, no matter what, don’t forget they are the unsung heroes of this battle.