People are busy.  That busy-ness leads to compartmentalization of our lives. We have people we connect with exclusively at work, others at church, perhaps some solely because they happen to be our neighbors. 

It takes a lot of time and effort to cross connect boundaries to move these associations from affiliations to actual relationships.  For that reason, most people are content to simply maintain these connections while it is convenient.  I have found that once the context for the association is removed, so is the entire connection. 

We moved around a lot in the years I spent working.  While we were living in one place, it would seem that we had a lot of connections with coworkers, neighbors and people from church.  However, once we moved, most of those connections were lost – out of sight out of mind, I guess.  Besides, maintaining these connections may require work – like sending personal messages on Facebook or an occasional phone call.

Now, ALS has caused me to lose connections.  Since I no longer work, those interactions are gone.  Since I can rarely make it to church these days, most of those connections are gone.  

I am not able to send emails or make phone calls without someone doing it for me so many relationships have been lost.  I am in my home a lot so fortunately, my neighbors are still connected to me!

Being in this situation has made me think about what people can do in order to stay connected especially with someone like me who has been forced to be removed from the environments that led to all their social interactions.  I am not going to lie; I am lonely.  

ALS is my only reliable constant companion.  Russell and Laura are around me the most but they focus much of their time and energy simply on taking care of me.  My children do spend time with me but they are also typical young adults who are busy with jobs, friends and school.  I long to have some meaningful connections outside of my family.

There are a lot of good, well-meaning people out there who may be reading this and know someone like me who is lonely.  Perhaps you have an elderly neighbor who recently lost his spouse or a coworker who took an unplanned early retirement. 

I want to encourage you to take steps to maintain the connections you have in your life and turn them into relationships.

Even if it has been a while since you last communicated, find a way to reach out to the person.  With all of the electronic options available, it is so easy today.  Send an email, text or utilize  ancient means of communicating like a phone call or even a note in the mail.  I guarantee hearing from you will bring a smile to the person’s face.

Now that the lines of communication are open, I suggest that you stop by for a visit.  In order to avoid awkwardness, and potentially overstay your welcome, it is a good idea to arrive for the visit prepared with an activity. 

For example, you could bring a photograph from an outing that made you think of the person you are visiting and talk about the reasons why you thought of them.  You might bring a passage from a book that you found interesting or inspiring.  You could even come prepared with some funny YouTube videos queued up on your phone so you can share a few laughs.  Everyone loves cat videos, don’t they?

If the visit goes well, ask at the end of that visit to schedule another time to get together.  Do it then.  If you wait, months may go by before you get up the courage or think you have time to set up another visit.  Pull out your planner and pencil in a date.  

If the person you are visiting is healthy, you might set something up once a quarter.  If the person you are reconnecting with is in failing health like me, you may want to set something up more often.

If the format of your first visit went well, why not stick with it?  If it didn’t go well, try one of the other suggestions.  If you have the luxury of traveling, ask if the person you are visiting would like to see your vacation photos.  I know I would love to live through someone else’s amazing experiences.  

If you have cute kids (and don’t we all?), why not share some videos of your children?  This is a win-win because you will enjoy sharing your photos or videos and the person you are visiting will enjoy getting to know you better.

Be cautious of bringing children and too many people at once.  For people like me, having lots of people and especially children around, increases my risk of being exposed to illness which could be deadly.

Sometimes a simple massage or moving my arms is all I need because I cannot do it myself.

Good habits are all about discipline.  Discipline involves discomfort.  Force yourself to get uncomfortable as you reach out to someone who needs a relationship in their life.  I am reminded of the quote from Mother Teresa: 

Last week’s post presented a day in my life from Laura’s perspective.  This post talks about a day from my perspective. 

 Let's begin our "day" at 9pm on Saturday when Laura puts me in bed.  I look forward to getting into bed because Laura will sit down and watch a movie with me.  I imagine this is what many married couples are doing on a Saturday night together so it helps me feel “normal” for a bit.  As we laugh together at the movie, even if it is a bad movie, I forget about what is going on in my life.  

It is 10:15.  Laura used to give me a shower but because I cannot help with the transfer, it is safer to stay in bed and have a sponge bath.  I have to admit this is not bad having a hot blonde taking care of me! 

 Unfortunately, my sponge bath is interrupted by all the mucus in my throat.  I start panicking because I cannot breathe.  Laura has to use the suction machine to vacuum the mucus out of my throat.  It feels awful because I am gagging and she has a tube in my mouth.  My body is in distress so I need to distract myself with happy thoughts.  I know this breathlessness is temporary but it is scary!  


Laura finishes the sponge bath and I need to use the toilet.  This is something that in our life before ALS was a very private time.  It was a time for me to catch up on my emails and voicemails.  I know you didn’t want to hear that but I am just keeping it real! 


Now, I feel humiliated that my wife has to deal with putting me on the toilet and checking on me to make sure I am alright – there is a danger I could fall off.  By the way, I am not alright from an emotional standpoint but I don’t say that to Laura.  I watch her struggle to move me around and I am thankful I am not a big person.  

At 10:50am, we continue with the morning routine. Laura dresses me, shaves me with an electric razor and makes sure I am presentable.  I am ready for my percussive vest and cough assist.  This is another part of the routine that I don’t enjoy.  The vest pulses to shake my chest and loosen the mucus in my lungs so the cough assist can help me cough it up. 

I can imagine this must be similar to what water-boarding feels like.  I am not able to breathe when the machine forces air into my lungs and then sucks it out.  It is so violent that my eyes tear up.  After a few cycles, I am exhausted.  I don’t want to do this anymore. 

At 11:30, we have completed that draining regimen.  It is time for more force-feeding.  I know I should be happy about getting all this care but it is really making me feel sad.  I should be taking care of my family and not the other way around. 

I realize that I have to be nourished otherwise I would be too weak to get out of bed.  Laura reminds me that I am not doing this for myself; my actions are setting an example for my children of not giving up just because life is hard or not what you expected.  

My morning routine is over by noon.  It is time for Laura to take care of herself.  I feel bad for her because we have a fabulous master suite from which she has been evicted by this disease and forced to the basement.  I wish things were different but we are where we are.  

The afternoon moves along at a more leisurely pace.  I am thankful I have a computer that can understand my commands.  Using my eyes, I can move the cursor on the screen then, using my legs, I can push my hands resting on my lap together to press a button that acts like a mouse click.  I enjoy playing chess with people all around the world.  While I am playing, I have another opportunity to escape.  

It is Sunday so we are going to church.  I used to enjoy getting in the car and just taking off but not anymore.  I feel like a baby.  Laura needs to make sure my “diaper bag” is properly outfitted with everything I may need during an excursion.  


Riding in the van is uncomfortable.  Try as she may, Laura cannot avoid all the potholes or speed bumps.  Every time she hits the slightest bump, since I have no muscular control, it jostles me.  Imagine a bag filled with water bouncing and flowing with the vehicle’s every move; that is me.  I would like to avoid going out but I do it because my family needs to have as normal of a life as possible.  

We enjoy the church service.  The people at church are an enigma.  Every Sunday, I am met with much love and concern; however, these sentiments must be reserved for Sundays only because I typically don’t hear from anyone between church services.  I think, in general, people feel uncomfortable around me.  

There are those who seem concerned but never visit and then there are people who come over and talk to my family about me while I am sitting right there!  I have found myself saying, “I am right here!  I can hear you!”  I don’t think they are bad people, they just don’t know how to handle my situation.  Maybe that is an advice column for another blog post!

My day is over.  I am very fortunate that I have my family.  I see them laughing in the kitchen.  Jordan is acting silly, trying to lick Laura’s face. Laura, acting totally out of character, surprises Jordan, and licks her first!  We all laugh.  Even the dog gets involved by barking.  It is pandemonium and I love it!  It is my life and I am thankful to have another day in it!

Note, I recognize this is longer than Akhil’s normal blogs.  There is a lot that goes into creating another day in Akhil’s life so lots of words were needed!

 A day in Akhil's life isn't simply a day in his life. His every action must be completed by someone else so a day in his life becomes a day in someone else’s life. 

When he wanted to write a blog about his day, I thought it was a good idea to share with the world what the guts of living daily with ALS looks like both from Akhil’s perspective and mine (Laura, his wife).  Akhil will share his perspective next week.

We both finally doze off around 12:45am. I am awakened at 2:00am by Akhil’s shouts muffled by the mask and noise of his AVAPs.  The mask is leaking again.  After attempting to adjust it, but not being able to stop the air from leaking around the mask and blowing into his eyes, he insists I remove the mask altogether. 

I hate to do this because the AVAPs helps deliver more oxygen to his body then Akhil can get without it. I reluctantly agree.  I adjust Akhil’s position in the bed to prevent pressure sores from forming. We both get back to sleep by 2:30am.

 At 6:00am, I am awakened again by Akhil.  He needs to be moved.  I shift his position quickly and slip back into bed.  Now sleep comes more slowly for me because it is getting close to the time that I awaken the rest of the week when I am not taking care of Akhil.  I know I need more sleep or I will be dragging so I force myself to lie there until I doze off.  I wake up on my own at 8:40am feeling well-rested.  

At 10:50am, I lift Akhil off the commode back into his wheelchair.  We continue with his morning routine.  I put his shirt on him so we can tackle the next item on our agenda: clearing his lungs. I take him back to the bedroom which is beginning to resemble a hospital room with the bed and all the paraphernalia used to keep Akhil functioning. 

I put a vest on Akhil that attaches to a machine that violently vibrates his chest for twenty minutes to loosen the mucus that has built up overnight.    Meanwhile, I throw in a load of laundry, make the beds and tidy up.  I stay within earshot because Akhil can suddenly need suction during this process.  Today the machine runs its course uneventfully. 

After unfastening the vest, I get two more machines ready to go:  the cough assist and the suction machine.  The cough assist does just what it sounds like.  It helps Akhil cough because he no longer has the muscles to do that on his own.  It forces air in his lungs to expand them then it pulls air back out.  We go through a couple of cycles of this before the cough is productive bringing up mucus which I quickly suction away.  We repeat this process until Akhil is either worn out or feels that his chest is clear, whichever comes first.

At 11:30, we have completed that exhausting regimen.  I give Akhil a second formula through his feeding tube.  I shave him, trim all the unruly hair that you men know about, trim his nails and brush his teeth.  He is looking handsome and ready to tackle his plans for the day.  I am finally able to get in the shower.  It is 11:50am.

I go to the basement where I have been living for the past two years since this disease took over my space in the master bedroom.  I sleep on a sofa bed when Russell is here, living in a space that was intended for short-term guests, not a permanent resident. 

I have moved my toiletries downstairs so I can shower and get ready but I have not moved my clothes.  I think part of me is hoping that there will come a day when life returns to “normal” and I once again occupy the queen’s place in the house!

At 12:30pm I give Akhil his second dose of supplements in his feeding tube.  This is a source of additional calories thanks to the coconut oil and also counts toward Akhil’s liquid intake.  It is my (or Russell’s) responsibility to make sure Akhil gets his four formulas per day plus four cups of water or liquid.  If we fail, there are consequences like issues with using the bathroom and dehydration.

The afternoon moves along at a more leisurely pace.  Akhil has time to play chess on his eye-gaze-equipped computer or watch TV.  I have an opportunity to do more laundry and get caught up on household tasks.  The time from 12:45 until 4pm is basically “free time”. 

I just have to give Akhil a formula at 1:30 and another at about 3:45.  Other than that, I stay close in case he needs something.  He typically needs his elbows moved and feet adjusted fairly frequently and occasionally some suction.  Other than that, the afternoon is mine!  Today I choose to spend that free time writing this essay and catching up on laundry.

Just before 4:00, I move the van into the street so I can load Akhil into it so we can attend our church’s evening service.  Our driveway is slanted and Akhil feels it is dangerous to ride up the ramp into the van on a slope.  (I have the computer set up so Akhil can see what I am typing on the big screen TV so he informed me he does not “feel” it is dangerous, it IS!) 

I humor him and move the van to the flat street.  I maneuver the wheelchair into the van using the ramp that comes out the trunk.  I fasten the hooks to the front and back of the wheelchair to keep it secure.  I put a seatbelt on Akhil to keep him secure and adjust his chair so he is comfortable.  

As I drive us to church, I have to be careful to avoid potholes and go slowly so Akhil doesn’t get too jostled.  He doesn’t particularly enjoy going places these days because of how uncomfortable the car ride can be.  Once we get to church, I unhook his chair, unfasten his seatbelt and Jordan drives him out of the van and into church for reasons I won’t go into but think back to the bathroom door scars.  

We enjoy the church service and get home at 6:30pm.  I give Akhil his last supplements in his feeding tube and figure out if he has had enough water today compensating for any shortage.  I get dinner ready for me and Jordan.  It is usually something quick and simple because I am exhausted from having most of my time spoken for. 

I lament my expectation that weekends are supposed to be for fun and relaxation, something that evades me.  We wrap up dinner and dishes by 7:30pm.  I sit down for an hour or so to talk to Akhil or watch a show with him.  Russell comes to take over at 9:00pm.  He and Akhil head to what used to be my bedroom where they shut the door and begin their routine.

I descend to my bedroom where I spend some time planning the week ahead and reflecting on the blessings of this past week. Rather than focusing on all the work and exhaustion, I focus on how thankful I am to still have Akhil in my life.  I close my eyes and enter a peaceful rest. 

Imagine that you are in the prime of your life (maybe you are!).  Take that image further, and think that your job is going great, your children are amazing and you have a wonderful relationship with your spouse (hopefully all this is true!).  

But, then your world is rocked by a job loss, an unfaithful spouse or a child making some bad choices.  How do you find happiness here?  

Being an engineer, I was excited to find out that the key to happiness lies in a mathematical equation!   I can manipulate that!  The equation is Happiness=Reality÷Entitlement. 

There are three variables in this equation:  Happiness, Reality and Entitlement.  You have the power to manipulate only one of these variables:  Entitlement.  Happiness is a result of your reality compared to the level of entitlement you feel. 

Reality, well, it is what it is.  Let’s assign reality a value of, say, 10 (for easy math).  Let’s say your entitlement level is pretty high, a 10, then your happiness level is going to be a 1.  Now, let’s say your Entitlement level is pretty low, a 2, then your happiness level is going to be a 5!  Basically, the lower your expectation of being entitled to things, the happier you will be!

Before going further, I should clarify that in some extreme cases, time is an added variable.  For example, in the case of a death of a loved one, you may not be able to find happiness until a significant amount of time passes.  However, this post will help you even in extreme circumstances.  This equation is not a silver bullet but it is another way of thinking about your life. I know when I find myself throwing a pity party I think about math, the variables and my part of the result.   

You may feel that you are entitled to a CEO-level position paying $250,000 or more per year but you are offered a managerial spot paying under six-figures.  Your happiness is not going to be very high!  You can turn that around by changing your thoughts of entitlement.  

You may believe that you are entitled to good health because you eat right and exercise and yet you face a life-threatening diagnosis.  How do you stay happy?  

You must realize that just because you do all the right things, you are not entitled to anything.  Once you are able to change and control your attitude of entitlement, you can control your level of happiness.

You can dramatically reverse your low level of happiness by taking on an attitude that is the inverse of entitlement:   gratitude.    If you look at your life and view it through a lens of gratitude you will realize you are blessed rather than short-changed. 

I am happy because I am not focusing on the life I feel I am entitled to.  I am accepting what God is choosing to give me and because of that, I stay happy.  If you are in an unhappy frame of mind, you may need to re-evaluate what you feel entitled to and recognize the blessings in your journey. 

These principles are not my idea.  They are taught by Jesus in the book of Luke 14: 7-9.

When he noticed how the guests picked the places of honor at the table, he told them this parable:  “When someone invites you to a wedding feast, do not take the place of honor, for a person more distinguished than you may have been invited.  If so, the host who invited both of you will come and say to you, ‘Give this person your seat.’ Then, humiliated, you will have to take the least important place.

Rather than feeling that you are entitled to the place of honor at the party, just be grateful that you were invited.  Looking for blessings in whatever situation you find yourself in will increase your gratitude and lower your level of entitlement.  That is the key to happiness!