“My Man Card” Chapter 13

Growing up, a boy is taught a certain set of “man rules” from his father certain that as men we continue to live by. On our 18th birthday we even get our own “man card”. A man card is a non-literal licensure of one's masculine identity, obtained through recognition of manhood in one's culture, and maintained by upholding acceptable standards of manliness. Some of these rules are as follows:

1. Never talk to a man in a bathroom unless you are on equal footing: both urinating, both waiting in line, etc. For all other situations, a nod is all the conversation you need.

2. Never use the middle urinal when the others are occupied unless you absolutely have to.

3. Never shake a man hand or touch him when in the bathroom.

4. At home close the bathroom door and never walk in on someone when using the toilet.

5. Wipe your own ass.

6. You never ask someone to join you when going to the bathroom.

7. The man drives and maintains the car.

8. The man cuts the grass.

9. Don’t cry in public or in front of your family.

These of course are not the complete list. If I told you them all I would be violating the “never share the man rules with the opposite sex” rule. All these rules make sense and are followed by most men. Of course there are some situations when some rules cannot be followed such as, hospitals, jail and the military.

 I was doing really well following these rules until one month ago. I never left the bathroom door open at home and no, you can’t brush your teeth while I am going to the toilet. Public restrooms were sanctuaries and I was like a monk honoring a vow of silence. I drove when we went out and cut the grass when needed. Even after my shoulder surgery years ago I was cutting the grass the next day. I’m not even sure if my children ever witnessed me cry.

Everything changed on 28 Oct 2022. You see I was having more trouble breathing and my CO2 was out of control. ALS has weakened the muscles around the lungs and I cannot take deep breathes so I’m not able to expel the CO2 from my body fully. It was only a matter of time before I crashed and would need medical intervention. I had a BPAP machine at the house since July but, have not used it. My claustrophobia and stubbornness as well as my lack of awareness of CO2 poisoning prevented me from using it.  I was turning into the Hulk, no not the muscles but green. I cannot say for sure if I used the BPAP it would have prolonged the date or not but, that is behind me now. Two weeks prior I went to see an ENT and it was recommended that I get tracheotomy and was ensured it would help with my breathing/ CO2 issues. With the use of the BPAP and other devices I would turn into Bruce Banner again. What I was not told was how the procedure would put me in the hospital for two weeks and take my “man card” away.

After the surgery I woke up with a trach and hooked to a BPAP machine the doctors told Laura everything went well and I should be good to go in a few days to go home. Then I was diagnosed with my second case of pneumonia. So there I was stuck in bed hooked up to the BPAP, heart and other monitors, a hospital gown and a pee bottle. Man rule “never use the middle urinal when the others are occupied unless you absolutely have to” option was out the door. If I had to go it was pee bottle time. So even though I technically had my own stall, handing over a bottle of pee, not cool.

Day after new Trach

I was there about a week and still had not gone number 2. The doctors started pumping me up with laxatives but, after a few days still no action. Ten days in and my man card was in trouble. The male nurse came in and said the doctor prescribed an enema. I don’t know about you but, this was a first for me. Without going into too many details I can now say I never want to go to jail. The drugs and ALS has affected my body digestion system causing constipation.  “Closed bathroom door when using the toilet”, “You never ask someone to join you when going to the bathroom”, were the next to go. The male nurse told me at the stall when you are done just hit the call button and within minutes I passed a landmark and “wipe your own ass”was gone as well.  Over the next week regardless of the nurses’ sex I had someone bring me to the toilet and help.

Before going the hospital I was able to shower, drive, use the ÿ in my left arm.  I cannot say if my ALS progressed at a normal rate while there but, I can say the care at the hospital did not help.  Having the trach took away the last verbal speech I had. So I am 100% relying on my APPs or my advocate to speak for me. The first week in the hospital the nurses did not offer a shower, brush my teeth, daily exercise or other basic care so I grew weaker. I also realized not all nurses and doctors understand the care requirements for someone with ALS and expected me to ask for what I need.

Communication was very difficult because the nurses saw me as a faceless patient and had no patience to let me have time to write my answers before moving on to the next question. I was always two steps behind and we were all frustrated.  Laura and I even created hand and arm signals to help speed up the process between us but the nurses changed daily so I had to start all over again each day when Laura was not around. By the time my two weeks were up I was not the man I was prior.

Once home it was time for Laura and I to figure out who I was as a man and how to care for me. First was the trach care and breathing requirements as life saving and maintenance is the number one priority.  The first few days Laura and I plugged away and got things going. Once again she is my rock and prior to leaving the hospital made sure she was trained and all supplies were home. Then the next priority was to get a good shower. The only problem was I was still scared of the shower from my first pneumonia episode in August and I had it again. On top of that, how do I shower with a trach? I can lie and say my wife never saw me naked let alone in the shower but this time was different. The hospital stay weakened me so much I can no longer shower on my own and Laura has to help.  Day three my daughter Dominique who was restationed to Ft. Belvoir, VA was home on leave has to help me change, take care of the yard and drive to the store. Day eight home and Laura had to help me go number 2 as I am too weak to get off the toilet and yes, you guessed it, wipe my own ass.  We have since added a hospital toilet chair and I have gained some strength back to gain some independence again. I hope to continue to recover and get stronger but, I know I will need help again as my ALS progresses. So for now I will accept all the help I can get.

Laura in my room ready to learn.

I find myself frustrated and somewhat of an asshole lately. I cry in front of my wife and kids more now than ever before. ALS is known to have an effect on emotions causing people to cry and laugh more. I will tell you it’s not a symptom of ALS it’s the mere fact of living with ALS causing me to be more emotional.

All my life I lived by the man rules, taught my son the rules, even corrected guys who broke them because I thought they mattered. These are the golden rules of manhood.  In my mind I lost all control of the rules and my man card at the hospital.  Only to realize that is just a bunch of bullshit we tell ourselves to make us feel like manly men in control of our lives.

 As I transition many people will be helping me and I appreciate them all. I realized that sometimes you need to cry, help wiping yourass and being a passenger and it’s ok. I am a blessed man, my family loves me and to them it’s their turn to take care of me.

Life is funny, all these years worried about rules and my man card and none of it matters.  In the end I did not lose my man card that day, I became a stronger man.