I live in that solitude which is painful in youth, but delicious in the years of maturity.

Albert Einstein

For most of my life I fed off the energy of being part of the crowd. I have always loved my crew, team, or whatever organized group I have been part of.  I can’t think of a time from childhood on that I ever ate a meal alone. But with ALS there are so many obstacles to being social.  It is not any body’s fault. It is just the way it is. I have had to learn to love being alone. 
Most mornings when Caitlin gets up with the kids my body is not ready to start moving. I can hear the boys out there wrestling with each other, eating breakfast, or watching a show in the family room.  Caitlin has always been comfortable in her independence so she likes to go outside and work in the garden or do other chores around the house. Thankfully I am getting physical therapy in the mornings now, but while I lay there and wait, I am already working on warming up my patience muscle for the day ahead. 

Sometimes we get early morning visitors to our bed.

After my body is able to move enough to get up, I have to do my two hour morning bathroom routine. Caitlin takes a break from chores to get me situated.  She makes and carefully places my 1,100 calorie breakfast smoothie in front of me. But this bathroom routine is not a time she or I want to spend together, so it is another opportunity for quiet reflection. Well, not entirely quiet. Only a few rooms away carries on the perpetual ruckus of our three savage kids.  I hope one day I am able to tell them how their shenanigans saved my life on a daily basis. 
In the afternoons we are blessed to have our wonderful au pair Maria to keep the boys busy. On the good days Caitlin takes me to the gym or the pool.  She will either set me up on a float or put me on the elliptical so she can either do her workouts or run errands. But I am never alone. There are always friends who come to check on me or even stop what they are doing for a while to hang out. On these good days I am reminded of how much I love people and it makes me so happy just to see their smiles. On the bad days Caitlin still has to run her errands and workout so she puts me in bed where I will be safe. The boys are usually out somewhere with Maria and the house is so quiet. This is an opportunity to pray and meditate and just practice patience. 

By night time we are all together as a family having dinner and telling everyone about the best and worst parts of our day. My parents make dinner for us a lot so I get to see them too.  My Mom talks about work and my dad grumbles about the news.  Maria tries to get the boys to talk about something other than burps or farts.  Caitlin will be weighing her food for the latest iteration of a diet program that I have tried unsuccessfully for years to understand. I am just grateful to be around everyone. For me this is what I live for. 

I live for night times with my boys.

Night time can be tough.  Caitlin is always nice enough to get me situated in bed before she tucks in the boys. Sometimes she falls asleep up there snuggling, but I don’t mind. If I need anything I can just make an announcement on the Alexa and she wakes up. The hard part is if I wake up in the night with a muscle spasm or a limb that has fallen asleep. I have to make a choice.  I can shimmy and roll around on my own to try to resolve it, but I always end up waking Caitlin up with what she calls “a snortin’ and a fussin'”.  The other option is to wake her up and ask for help. I try to do this sparingly because the health of a caregiver is top priority and she needs her sleep in order to maintain her status as family MVP.  Most of the time I try to fall back on the training I got in Navy SERE school. I breathe through the pain until it ceases to be a focal point. When it gets to the point where I feel like it is doing actual damage to my body, I give up and call out for Caitlin. I don’t know why, but this always leaves me feeling more defeated than anything else. 

Then morning comes and we repeat the evolution. I have learned to confront my aversion to solitude. I think it stems from childhood fears of not being good enough by myself. I am grateful that I have had the time and opportunity to really confront that vulnerability. The other day everyone was out of the house and the power went out. I was in bed alone and awake for three hours with no way to call anyone. A spider crawled up my arm over my throat and face and down the back of my pillow. He was good company when he was there but other than that I was able to train the muscle of my mind and be proud of myself for the growth I have made in what was once a major weakness. I guess I can can thank ALS for some things. I definitely don’t take human interaction for granted and have even learned to appreciate the gift of solitude.

4 thoughts on “Solitude

  1. Thank you for sharing your blog with us. You are such an inspiration. God bless you and I pray for a cure for ALS. God bless your family!❤

    Liked by 1 person

  2. Thank for this post. This all sounds so familiar (only from a Caregiver’s perspective). It is good to hear about the ALS patient’s view. The part about the spider reminded me of an incident with my husband Ed. I left him sitting in our van while I went into check on something at one of our rentals and Ed was blowing up my phone. I was irritated that he couldn’t just wait for me to get back. I went to check on him and there was a spider slowly dropping from the ceiling towards his body and he couldn’t do anything about it! I felt horrible at being irritated. It reminded me of the limitations that he struggles with that I take for granted.


  3. Good stuff Matt. I pray for you and your family. I pray for a cure to ALS. This was a great view into your life and how strong you are. My good friend’s younger brother was recently diagnosed and we’ve shared your blogs with them. I’m not sure if he’s reached out to you but hope he and his wife can find a friend in you and Caitlin. His name is Kevin. Peace to you.


  4. Thank you Matt. It is amazing to hear from you, Steve, Nate and others with full transparency what goes on in the minds and hearts and lives of pALS. Hope and Prayers as well as the details of each day are what sustain until there is a CURE.


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